Monday, February 24, 2014

The minion party!

Elijah had a great Despicable Me-themed birthday party on Sunday. I'm confident that he was pleased. We had him take a nap that day, and when he came downstairs afterward and saw all of the decorations up he said in his super-cuteness, "OH MY GOSH! Look at my party stuff! Thanks so MUCH, Mom and Dad! I'm so surprised! You surprised me! THANK YOU! I love it! Wow! Thank you!" :)

Meanwhile, Sammy was doing his most favorite thing: watching a show on the iPad. Could his snuggliness be any cuter?

No Despicable Me party is complete without minion cupcakes, right?! Elijah and Sammy swooned over these. They were a party hit.

One of my absolute favorite things throughout the years has been the Happy Birthday Face, as I call it. It's that moment when my boys realize they are loved and being sung to and that they are the total center of attention. I ALWAYS capture this moment on camera. Or, uh, people hear my camera click-click-clicking..

The minion cupcakes were devoured and all bellies were pleased.

The birthday boy got to eat the one purple minion of the bunch. He was very happy about that, ice cream on the forehead and all.

We stuffed so many people into our little home. It was cozy and awesome!

Elijah and Grandma!

Grandma and Grandpa hugs!

We were all so excited to have Elijah and Sammy's sweet little friends from daycare over for the party. Elijah and Paigey are a year apart and have known each other since they were babes. Sammy and Lainey are also a year apart and have known each other since birth. Our boys don't attend daycare full-time anymore, but we get them there every once in a while so they can spend time with these sweet little girls. They are just the sweetest little things and we are happy our boys have them as friends! Completely out of the blue, Elijah said to me the other day, "Mom, Paige is going to be my wife." I told him that Paige needs to want that, as well!

The coloring station, which Elijah later told me was his favorite part of the party. Special time with his Paigey and Lainey!


Leave it to Sam to NOT cooperate for a the cutest way ever.

This morning we brought the boys to see the dentist. It was Sammy's first time and he did GREAT! He was so cooperative and cute. He told the dentist, "I have twenty teeth!" :) Elijah did great, too, our little dentist pro. Neither boy had cavities, which was a relief. The whole ordeal took way longer than we anticipated, so Elijah ended up missing his half-day of school this morning. He will be back at it tomorrow!

Thursday, February 20, 2014

Happy 7th birthday, Elijah!

I love birthdays. It is so important for me to make our boys'  birthdays as special as possible. While Elijah was at school this morning I ran around town like a chicken with my head cut off, purchasing balloons and cake mixes and wrapping paper. I'm a last-minute gal! :)

We started the day off with a pancake breakfast! A shirtless one!

Elijah had requested lemon cupcakes, so they were awaiting him upon his return home from school. In the shape of the number 7, of course.

When he saw his stack of gifts, he said, "THANK YOU for the birthday surprises, guys! How nice! I'm so happy!" :)

I LOVE seeing genuine smiles on our boys' faces. This is greatness!

One of our gifts to Elijah was a knock-knock jokes book. He LOVES telling (and hearing) jokes, so this will be fun.

Enjoying a lemon cupcake with fart gun close by. Yes, a fart gun. His favorite gift, by far.

I love this happy face!

Have I mentioned lately how adorable Sammy is? He has been sick recently, so he's been SASSY. But normally...oh man, is he a sweet and handsome one. And SO very funny.

Look at those beautiful brown eyes!

Ok, this was NOT staged! :) Dan was doing something or another and Sammy came up behind him in a timely manner and shot the Fart Gun right into his backside. This is my life with boys! Constant potty talk and potty behavior! :)

After all of the love we gave to 300 Pillow Pets, Elijah and Sammy each found favorites. We got each of their favorites for them for E's birthday. Eljiah's was the red dragon (Fiery) and Sammy's was the puppy (Arfy).

Dan, putting together Elijah's Lego Movie lego castle. So intent. And with such huge hair. :)

Sammy with the Fart Gun. So serious!

And handsome!

This is the scene outside our home. The snow continues to fall and we expect to be completely snowed in by the morning, as we listen to the snowplows work almost constantly outside.

Elijah wanted to pose with his Fart Gun! :)

It is almost impossible to comprehend where we were at seven years ago today. We have all come so far since that day. We would not be the same people/family without the experiences we have endured since February 20th, 2007. Our journey has been INCREDIBLE! We are thankful and grateful and we wouldn't want it to happen any other way (aside from taking away the pain Elijah has experienced).

HAPPY 7TH BIRTHDAY, ELIJAH! We love you more than you will ever know, sweet boy of ours.

Dan's mom, who we love so very much, put together a very special memory book for Elijah from our trip to Florida in December. It is AMAZING! We have all looked through it thoughtfully, carefully and tearfully. It was such an incredible trip and we appreciate her efforts so much! Thank you, Grandma! We love you!!

Elijah is looking forward to his family birthday party on Sunday, when we will eat Minion cupcakes and play silly games. Thanks, as always, for checking in on us!

Wednesday, February 19, 2014

Special education re-eval/IEP meeting, 2014 version

Dan and I survived Elijah's 1.5-hour-long special ed re-eval/IEP meeting today. We reviewed 22 pages of notes on our boy! Whew! We feel like most of his team (after much testing/observing in the past few weeks) has a really good handle on him. Dan and I were fully engaged and made sure every little thing was addressed. It was good. There are some really great new advocates on his team, which is reassuring. We both felt a good connection with his Deaf and Hard of Hearing (DHH) and audiology advocates, which feels good considering his new "disability" label is DHH. Because of this, he is also eligible for Developmental Adapted Physical Education (DAPE). This is good news, too, since his DAPE teacher is WONDERFUL and we feel like she really gets him...and genuinely likes him.

If we felt like everyone really loved Elijah for the wonderful little person he is, we would feel much better about sending him to school every day. Currently we don't feel settled in general about sending him to school, which leaves a pit in the bottom of my stomach. He has had two good weeks of half-days, so we are praying for the absolute best for when he returns to school full-time (probably in two more weeks). We are super thankful for his advocates who love him! His DAPE teacher gushed about him today, telling us how much she loved him and enjoyed seeing his happy smile. Hearing things like this are good for my mama heart!

In a nutshell: academics are great, social skills are poor, responsibility/organization is poor and emotional/behavioral regulation is poor. None of these things are surprises to us. His near-deafness on his left side is thought to be a major contributor to frustration in class, leading to negative behaviors. We need to work on helping Elijah advocate for himself and also control his emotions. These are the main goals for the remainder of first grade.

Tomorrow Elijah turns SEVEN! Dan and I reminisced tonight about what we were doing exactly seven years ago tonight. Ugh, that was a tough one. We are so grateful for the past seven years and how far our oldest boy has come since then. It's incredible! Tomorrow Elijah has requested: lemon cupcakes and dinner at Applebee's! :) Despite the expected blizzard, we'll do it!

Thank you for checking in!

Tuesday, February 18, 2014

Insightful art

Occasionally in the early morning hours (if I'm actually sleeping and not listening to Elijah NOT sleeping) I have my super creative and insightful thoughts/ideas. A few mornings ago a vision came to me. I've been wanting to put together some important thoughts for Sammy and Elijah to carry with them through their lives. I was happy to have those thoughts I've been compiling over the past few years brought to me in such a creative way! I woke up and immediately started putting them together as I had seen them in my dream. I sent these to the printer today to be printed on canvas and cannot wait to hang them above Elijah and Sammy's beds!

Sunday, February 16, 2014

So long, Pillow Pets!

Our living room today before the Pillow Pet delivery!

SO many people gave generously in order to make this Pillow Pet ordeal happen and we feel so grateful for the generosity of our friends, family and perfect strangers! When we got to the hospital I went inside to let the security guard know what to expect. His response: "Uhhh...300....Pillow Pets?!? Okie dokie! Bring 'em in!" So we did! We unloaded FIVE carloads of PPs!

I think we overwhelmed the poor security guard a bit. :)

Here is Elijah and his heart pal Eli, posing in front of 300 snuggly Pillow Pets!

The delivery crew! We are so thankful for these kind friends of ours for donating their time today.

And here is our kitchen, minus hundreds of Pillow Pets. It felt strange to look at this empty scene upon arriving home. We have gotten so used to the PILE, literally climbing over bags just to use the restroom. The boys infused love into every single PP that entered our home, so we were a little bit sad to say good-bye. But we are so very happy knowing that each one of them will be in loving, happy arms.

The boys were able to spend time with Grandma and Grandpa this afternoon while Dan and I sneaked away for a movie. It was a huge treat all around. Elijah and Sammy LOVE time at Grandma's house and Dan and I rarely get time "away" alone.

This week: memory-attention-learning testing for Elijah, attempting to juggle his school schedule and a special ed re-eval meeting (gulp). We're still in the process of figuring things out for our oldest cutie, and we know it will only get easier from here. Thank you so much for checking in!

Wednesday, February 12, 2014

Pillow Pet power!

We won't have our final numbers till Sunday, but I wanted to share where we are at with our big Pillow Pet project! We currently have 270 Pillow Pets (along with 35 other stuffed animals/comfort items) for the kids at Children's Hospital!! This is INCREDIBLE! We are still receiving boxes in the mail almost daily (the UPS, USPS and FedEx drivers must be downright SICK of us!), but we plan to make the big delivery this Sunday. Thankfully we have had a handful of people offer to help with transport because we have two cars, one of which is not running. We would need to make approximately 25 trips if we were doing this on our own!

Every time our doorbell rings, the boys excitedly yell, "MORE PILLOW PETS!" and they run to open the door and literally SQUEAL when they see more boxes sitting outside. Elijah asks at least daily, "Why are we giving Pillow Pets to the kids, Mom?!" I am loving this lesson in Giving. This is the perfect way to show them why it is good to do kind things for others. Elijah has fresh memories of being sad and sick in a hospital, so he knows how good it feels to receive love during times like that. He gets it. He always ends our conversations with, "Yeah, it'll make the kids happy, Mom."

I'll wrap up with a few Sammy and Elijah funnies:

Me: Sammy, did you just wipe a booger on me?!
Sammy: Nooo! It was just some stuff from my nose.

Me: How are you feeling this morning?
Elijah: Extremely exstrangeable. 

Sammy: "Elijah, leave my toy ALONE! ..... MOM! Elijah is traumaticking me!"

One more puzzle piece clicked into place

Dr. J's nurse called today. The 24-hour EEG monitor that Elijah wore last week showed NO SEIZURES! This is great news. We can scratch seizures off the list and move forward. We did "mark" one of E's eye fluttering episodes while he was wearing the monitor, and Dr. J said there was a spike that showed (again) seizure tendencies. At this point, though, it's nothing at all to worry about or address.

We called and had the EEG results sent to E's sleep specialist in hopes that she might be able to gain insight from his overnight readings. We'll give her a chance to review them and follow up. We are determined to get him sleeping better. It just has to happen! Dan and I will continue to pursue options until we can figure something out.

Elijah and Sammy are both feeling a little bit better today, although neither of them is 100% back their usual spunky selves. E had another good morning at school today (at least according to him)! Yay! We spent some time this afternoon making valentines for his classmates and decorating a valentine box. We're hoping he will be able to attend the school party on Friday! His teacher had told us that she didn't think it was a good idea for him to come to class in the afternoons for the next few weeks, so we are hoping she will make an exception since he has been so excited about the V-Day party.

Thanks for checking in and we thank you all for walking this journey with us!

Tuesday, February 11, 2014

Croup: Season 6, Episode 2 (Elijah)

How ironic that the post I wrote yesterday was titled "breathing again" because Elijah was NOT breathing well through the night last night. What are the chances that he would get sick on his very first day back to school after being away for two months?! Sammy had been sick yesterday with a low-grade fever and lacking a little energy, so I should have known it was coming. Right before bed last night I heard a suspicious sound when Elijah laughed and I said to Dan, "I'm predicting a croup night."

He was up at 9:00p struggling. We gave him an epi neb and I put him in bed with me. I could tell it was going to come back by the way he was breathing. Around midnight (I think?) it was bad again. We really really didn't want to give him another neb because two in a night means a trip to the ER. We bundled him up and Dan sat out in the cold with him for 10-15 minutes. It was better, but still not good. So I sat with him in a steamy bathroom for another 15 minutes. It was better yet, but still not gone. I put him back in bed with Dan and me and prayed the same prayer about a thousand times.

The stridor stayed with him through the night, but it wasn't bad enough to warrant an ER visit. He's such a good sport. He got scared a few times last night (not as scared as I was), but he never complained. Even when we made him sit in the below-zero temps in the middle of the night! You can still hear the stridor today, along with a little cough, so we kept him home from school. Hopefully he'll bounce back quickly and be ready to go back tomorrow!

Sammy is doing better today, too. Thankfully he has seemed pretty unfazed by his little bout of sickness. He still has an appetite, especially for CANDY. He does everything he can to get us to give him candy. "Uhhm, Mom? I slept REALLY really good last night and I even went potty when I woke up! So...can I have a treat for that?" How can I say no to such cute manipulation?

Please pray for healing for our cuties! Thanks for peeking in.

Monday, February 10, 2014

Breathing again

After much prayer and anticipation, Elijah's first (half) day back at school was a success! Elijah told us that Ms. W (his special ed case mgr) told him he had a "great" day. We'll take it! He was so excited to show us a picture one of his classmates had drawn for and given to him today. He arrived back home in a great mood! We are hoping for many more of these days. He will do half days for the next four weeks and at that point we will possibly move to full days again (gulp).

I know I've said this before, but we are so grateful for Ms. W. She took time out of her morning to give me a call and let me know everything was going well with E. She told me some specifics, like that he was very quiet and attentive during circle/story time and that his classmates treated him like he was a celebrity when they saw him this morning. :)

Elijah even made it to karate tonight for the first time in almost 2 months. We're getting back into the swing of things! Yay! We are finally beginning to breathe again since surgery. I'm thinking there is a mathematical formula here. For every one day spent in the hospital, a week of recuperation is needed. Write that down! It's science!

Have a great week, no matter how cold! Brrr! Thanks for checking in.

Sunday, February 9, 2014

School tomorrow!

Elijah was a very good sport, having all of that stuff on his head for 24 hours (as expected...he is always a good sport about medical stuff). Removing the wires, tape and glue was mildly traumatic, but we took care of it quickly to reduce the trauma. We don't expect to hear results from this EEG for a few we wait patiently. We are fine with that. We are getting used to this patience thing lately!

I will be walking Elijah to the bus at the end of our driveway in the (freezing cold!) morning tomorrow for the first time in two months! It seems crazy that it has been so long. I feel simultaneously happy and anxious about it. I know that he needs school, the social parts and the academics. But I'm anxious about other parts that we have no control over. All we can do is pray that this last part of the year will be a mildly positive experience for him.

That's all for tonight. We wish you all a GREAT week! Thank you for checking in on us! We love you all!

Thursday, February 6, 2014

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!

Wednesday, February 5, 2014


Have I ever mentioned how much we love Elijah's doctors? He has the BEST people looking out for him, and his neurologist is no exception. He is WONDERFUL! His easy manner calmed me instantly at this morning's appointment, even before he said a single word. We chatted about our recent concerns, E's tics and recent onset of eye twiching/fluttering. He reviewed the EEG results from last week and even showed them (along with portions of the video that was taken during the test) to Dan and me and explained everything to us really well.

They couldn't have gathered better information from the EEG. During the period where they flashed lights in E's eyes, he had no unusual brain activity. Then a minute later, when there were no lights present, his eyes fluttered and there was still no seizure-like activity. Then later, as he was drifting off to sleep, there was a brief snippet of seizure-like activity and no eye fluttering. From all of that, we can conclude that the eye fluttering that happens when he looks at lights (outside of the test) is not seizure activity. The seizure-like activity they detected during the test was not a full-blown seizure, but indicates that he could have seizure "tendencies." There we go with the word "tendencies" again. How many times have we heard that word when people describe Elijah?! That could be normal or it could mean that at some point Elijah might possibly develop seizures. He made it sound like it was nothing to worry about now, but that we should let him know if it ever gets to the full-blown point.

Tomorrow we will go back to the clinic to get Elijah hooked up to an ambulatory EEG that will monitor brain activity for 24 hours. Dr. J wants to rule out full-blown seizures first and foremost. Seizures can disturb sleep, so with Elijah's sleep issues it will be interesting to see what his brain activity is like while he is sleeping...and waking up in those early morning hours.

Dr. J believes that Elijah has a tic disorder and that the eye movements, along with the rest of his body movements, are part of that disorder. Assuming we rule out seizures, there is nothing to do about the tics and there is nothing to worry about. He said when he sees a kid with tics, he knows two things for certain: the child has ADD (or tendencies, ha!) and the child has OCD/anxiety. Uhhh, hello! These are the exact things I've been saying about E all along. As he spoke, he just continued to describe our boy, as if he has lived in our home with us for the past seven years. "...these kids tend to be able to focus very well with things they are interested in. They cannot focus at all when there is no interest. Outbursts and an inability to transition out of an enjoyed activity are major issues, as well. Also, extreme stubbornness is common in these children..." Seriously, I felt like maybe a secret camera has been rolling in our home for the past several years. Dr. J told us that he had tics as a kid, too, and that most specialists can say the same thing. Dr. J has had the ADD "tunnel vision" his whole life and that is why he became a specialist. He loves his profession and is able to focus on it well because he loves it. He would not be able to focus on a different job without being medicated.

Dr. J hadn't seen Elijah since he was 2, and was impressed with how far he has come given all of his challenges. He gave Dan and I kudos for doing a great job with him, which felt good. We all know Elijah's the awesome one, though.

Click, click...I feel like we clicked at least a couple puzzle pieces into place today. Next, we will see what tomorrow's EEG tells us. After that, we'll explore more options with the sleep specialist and also explore ADD/OCD/anxiety. We're getting there!

Tuesday, February 4, 2014

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!

Monday, February 3, 2014

A miracle before our eyes!

We still know nothing specific about the EEG results, aside from the fact that they were "abnormal." We have an appointment on Wednesday morning at 8:00 to discuss the results with Elijah's neurologist. It's anxiety-inducing to think about it, if I'm being honest. I know it'll be an answer for us and it's another step toward figuring out the Elijah Puzzle, but I am a mama and I do worry.

Now for amazing, miraculous news that will blow you away. If you don't believe in God and the power of prayer, you might reconsider after reading this. You might remember me writing about what Dr. L said to us after E's recent ear surgery. He told us that there was very very little hope that Elijah would ever be able to hear again out of his left ear. He said that the only reason he was telling us there was a chance was because he didn't like to say the word "never."

You know the rest of the story. We have been moving forward with the assumption that Elijah's left ear is deaf and will be forever. In the past week or so, though, Elijah has been insisting that he can hear a little bit out of his left ear. Dan and I have tested him a few times by plugging his right ear and whispering very softly into his left ear. He was actually repeating words back to us! But I still thought that maybe his right ear was just super-human.

Fast forward to today. Dan brought E to see Dr. L for surgery follow-up. They gave him a hearing test to check for the small chance that there might be residual conductive hearing. Guess what. HE HAS CONDUCTIVE HEARING. It's minimal, just like it was before surgery, but it exists! The doctor said, "There is really no way to explain this." Dan said, "Yes there is! Prayer!" There have been so many people praying for Elijah about this specific thing in the past month. SO MANY PEOPLE. Dan has been telling me since January 7th, as I sat crying in the waiting room at Children's Hospital after being told that Elijah would be deaf is his left ear for his entire life, "A miracle is going to happen. He is NOT going to be deaf. I just know it." Sure enough, my faithful husband has been right all along.

Elijah's footplate on his left side was literally broken in half and totally damaged. It had been that way for some time, based on the fact that there was no fluid in or around it. The fact that even a few cells survived is a miracle. THANK YOU all for praying. Thanks to your prayers, a miracle has happened right before our eyes and our oldest boy will be able to hear again.

At some point this coming summer, we'll do another surgery to check for cholesteatoma regrowth and also to see how much hearing can be restored in that ear. Until then, we will manage with what we have! Elijah has been cleared to return to school for half days for one month, and hopefully he'll be ready for full days after that. I'm waiting to hear back from a few people from his school, but I'm assuming we can get him back soon! (Pray for good-behavior angels to surround him, please.)

One last thing that made us giggle. Dan was explaining to Dr. L about the abnormal EEG and how we are trying to put all of these puzzle pieces together to figure out what is going on. Dr. L said, "Elijah's just an evil genius, controlling everybody's minds." There you go, puzzle solved. :)

And THERE YOU can now say you know someone who God performed a miracle upon.

Saturday, February 1, 2014


We have such an incredible support system. My boys and I are blessed with so many pray-ers and truly kind, amazing friends and people in our lives. THANK YOU for being here, in whatever capacity you are a part of our lives.

I was able to fight off the "bad thoughts" all day today, which is a small miracle. Every time the darkness started to creep in, I shut it down. God prevailed! We are in the mindset that this newest bit of info will hopefully be at least a step toward answers, and not an additional challenge to add to The List.

That's all I wanted to say tonight. Thank you for reading, loving, emailing, praying, commenting, sending Pillow Pets for "the kids" :) or even just thinking about Elijah during this craziness. Thank you!