Wednesday, July 30, 2014

Peeling back the onion. (And fun pics at the end, if you get that far!)

Approximately 90% of my brain has been used to figure Elijah out this summer. It's been worth it because this week I finally feel like I'm maybe sort-of kind-of beginning to understand the way he thinks and organizes his thoughts. The following paragraphs may or may not make sense, so please bear with me. I have a lot on my mind but I have not pre-organized any of it.

We have really buckled down with routine and schedules. Our routine has become even more strict (if that is even possible). I write very detailed schedules on the white board, including times that everything will be happening throughout each day. I have to remind Elijah to glance at it a couple times every day and he takes it in. I can tell it helps to make him feel secure. He needs the predictability. Now that I'm writing exact times down, I have to do my very best to stick to them! If I write down that dinner is at 5:00, I need to make sure that happens.

There are so many layers to the challenges we tackle daily, so I sometimes forget the really helpful little details that we've learned along the way. Like making sure Elijah is exposed to sunlight (or faux sunlight) in the late afternoons/evenings due to his sleep disorder. A few days last week when it was raining and we didn't go outside, he was getting up REALLY early the mornings that followed. I've been making sure he goes outside as much as possible after 3:00 when it's doable. On rainy days, we will be breaking out his light again like we did through the winter. It seems to help enough to continue with it.

I've been extra zoned into what works and what doesn't work with him lately. He relies on anything that involves details or facts. When he meets someone new he asks them, "What is your name? How old are you? Where do you live? When is your birthday?" Then he says, "My name is Elijah. I'm seven. I turned seven on February 20th. I'm going to be in second grade in September. My mom is 39. She turned 39 on July 23rd. That was a Wednesday." He engrosses himself in geography and history (facts). He now knows where every single country in the world is located on the globe, can you believe that?! He knows how many countries are in each continent, what their flags look like, etc. He constantly checks the weather (I haven't shared with him yet that forecasts aren't factual, but right now he thinks it's concrete information). He falls apart whenever my answer to one of his questions is, "I don't know." He cannot handle that uncertainty and has a meltdown. I'm still figuring out how to deal with this (ideas welcome!). The other day he dumped a bunch of markers onto the floor. I said, "Elijah, you are going to have to pick these up." He dropped to the floor and began flopping around and screaming, "I caaaaan't! I don't wannnnt to! I CAN'T DO IT!!!!!" So I said, "Please pick up the green, red and blue markers," and he instantly was by my side looking for the markers in that exact order. "Green, red and blue? Here you go!" I have been trying to be as specific as possible and also to be as factual as possible when interacting with him. Unless we are doing silly tickle-time. Then nothing is factual and everything is out-of-control and awesomely silly. :)

I have also used facts as a distraction when he seems to be on the verge of falling apart. I will ask something like, "Can you tell me who the 16th president of the United States was?" and he is all over that and will usually follow it up with another question. Music has been a great distraction for him lately, too, so I use that especially in the car when things are beginning to unravel. He has a few books about the U.S. and magnets that he likes to look at with all of the U.S. presidents, so directing him to things like that helps sometimes.

And as always, we've been putting him to bed consistently early at night. According to the fitbit, he is sleeping on average 9 hours/night, which is great!

We continue to work on potty issues and every couple of days I seem to have a new idea. The other morning I had the thought to draw pause buttons on paper and cut them out so he could put them in his pocket. I've been telling him all summer to "push the pause button" when his body needs to go potty. I figure having an actual "button" to push (or just hold) might help.

I've had a few ideas for the upcoming school year. It might be helpful to write out some short questions ("Do you need help?" "Do you need a break?" "Do you understand?") and taping them to his desk so his teacher can point to them if he appears lost/overwhelmed (as opposed to asking him in front of his peers). I would like for there to be a safe place for him to go when he feels overwhelmed, and hopefully before he begins acting out. We are constantly trying to make him more self-aware. This has been a big challenge. He has such a difficult time describing general feelings or events. He is really good at explaining details, but main ideas and generalizations are really tough for him to grasp or explain.

Heart camp has been going great! He is so much more excited about being there this year. He seems to be having a blast. Sammy misses him while he is gone and they devour each other once they are reunited. Yesterday was "costume day," so he wore his new crayon costume. I found the following photo on the camp's website today. He spruced up his outfit a bit, I see. That's our boy! :)


Dan was home today so we all ventured out after camp to get our first-ever pet! Or pets, I should say. The boys are now owners of two betta fish! Elijah named his fish "Bluey" and Sammy named his "Fishy-Wishy." We are all so happy to have new family members! I found both boys gazing into the tank many times throughout the afternoon.


Here is a funny pic I took this morning after I told the boys, "NO toys at the table!" As always, they were good at finding the loophole. :) (Notice Elijah is studying presidents on the placemat.)


I think that's all for tonight, whew! Hubby-snuggle time and bed is upon me. Thanks for peeking in!

Monday, July 28, 2014

Second year at heart camp!

We had a fun weekend spent mostly at the dropzone. I'll maybe save some of my Elijah-thoughts for another post and focus on other things tonight! I captured a couple cute smiley pics of the boys over the weekend.



Today was Elijah's first day of his second year at heart camp! It sounds like he had a blast! On my way to pick him up I was saying this prayer: "Please no poop or behavior issues, please no poop or behavior issues.." Repeat x 200. From what I gathered, there were no poop or behavior issues! He was sooo excited to tell me all about his morning, which was a big change from last year. He is able to wrap his head around what heart camp means for the first time. "Sammy can't go to heart camp because he hasn't had heart surgery, right, Mom? Not many kids have heart surgery, right?" He was eager to tell me about petting a chicken and playing silly games and preparing for the talent show on Friday. I have been praying so hard that he will make a connection with a fellow (local) heart friend. We will see how the week pans out!

Sammy and Elijah were both sad this morning before camp. Elijah kept saying, "But I'm going to miss Sammy today!" and Sammy kept saying, "I miss Elijah sooo much!" When we saw Elijah walking down the road to meet us, Sammy ran into his arms, saying, "BUDDY!" These boys love each other so dang much.

video

He did the EXACT same thing last year, but Elijah wasn't as receptive then. :)

video

We have a lot going on this week! It'll be a crazy one, but my post-surgery fog finally seems to have lifted. I actually planned a week's worth of dinners, wrote out a detailed schedule through next Sunday on the white board and have planned out a few photo shoots, work days and some fun time. I love having a clear head!

Thanks for checking in and I hope you all had a great weekend!

Thursday, July 24, 2014

Dirty toes

My birthday was awesome yesterday! My boys treated me to an incredible day. I woke up to a homemade breakfast sandwich (sooo yummy...Dan makes the BEST) while Sammy and Elijah made me food in their play kitchen. Elijah made me a Salt & Pepper Cake and Sammy made me Vegetable-Fruit Soup. Both were delicious! :) After I ate their food, Elijah "cleaned" up their kitchen and was pretty proud of himself for doing so.

Before I opened my gifts, Sammy said, "Here Mom! Open your new purple water bottle!" He couldn't understand why he shouldn't have said that. It was cute. And I loved the water bottle. I will forever have the image etched in my mind of both boys standing excitedly in front of me, literally jumping and bouncing around with enormous smiles and flapping arms because they were so excited to give me the gifts that they had picked out. I have the best boys! They gave me 39 spanks and then Sammy said to me, "Mom....I love your dirty toes." Oh my goodness, that boy. He is so funny. Dan and I got away for a quick dinner last night and that was delicious. It was a great 39th birthday!

We had such a fun morning today! We spent the morning with our friends Jen (E's awesome kindergarten teacher turned friend) and Allison (her adorable baby girl). We went to the music class that they attend every week and it was so much fun! Aside from a 15-second bit of "trouble" Elijah gave me, the boys did awesome and had such a fun time. Both boys loved the musical triangles and I noticed that Elijah was clanging his mini cymbals together with impeccable rhythm. I remembered from one of my NLD books that NLD kids typically are musically inclined especially in the realm of drums or instruments that require rhythm. Hmmm, something to keep in the back of my head. We played at Jen and Allison's house for a bit afterward and the boys had so much fun!


I feel so grateful for the ideas that have been sent our way regarding Elijah and some of things he has been struggling with. Thank you so much! My soon-to-be sis-in-law (right, Joel?) is going to school to become a child behavioral analyst, so she sent me tons of valuable thoughts and ideas. One of the things she mentioned that I thought was brilliant was to make our white board schedule portable so we can bring it to the dropzone. Why didn't I think of this? Above is our end-of-week and weekend schedule with the dz part being portable. Sometimes it seems like Elijah doesn't pay much attention to these schedules, but if I ask him a specific question about our day he knows the answer without having to look. He obviously relies on them for structure and predictability.

Last week I contacted Fraser (special needs organization) and Autism Society of MN and got E's name on their lists so we can get him evaluated for services. I'd love for him to be able to receive social skills help and emotional/behavioral help. I'm excited to see what comes from that. Depending on how they pan out, Courage Kenny is next on my list. I've been reading parts of E's neuropsych report every day to try to absorb the info from that. I'm feeling a bit desperate to get a few of our recent struggles under control before second grade starts.

Today was a mostly GREAT day, so I'd like to copy and paste paste paste.

This weekend: work, dropzone, church and family time. I'm so grateful for my amazing boys and for YOU for reading and caring about us. Have a wonderful weekend!

Tuesday, July 22, 2014

Details

One of the many reasons I love having this blog is that YOU (yeah, you!) chime in with helpful information. THANK YOU to the person who left the comment about the Incredible 5-Point Scale (this looks like it could be a very valuable tool for us!) and also to Heidi for the info about the potty monitor, the Malem Bedwetting Alarm (totally trying this during the day with E). We are so open to suggestions and advice, so we appreciate input! Thank you!

I read some valuable information in my NLD book today. I just have to share some of this, as it rings so true with Elijah. The below excerpts come from Helping a Child with Nonverbal Leraning Disorder or Asperger's Disorder: A Parent's Guide by Kathryn Steward, PhD. Sorry if this bores you, but so much of it NAILS Elijah's struggles, so I find it fascinating.

 
Mentally, Elijah often seems to be moving in slow motion, especially in fast-paced and chaotic environments. He gets the glassy-eyed look that lets me know he has had too much and is having a hard time processing the world around him. This is usually followed by: behavior. He also has ALWAYS focused on very specific details...the wrong details of any given scenario. He has done this since he first learned to speak. Whether it's a real-life situation or a book we are reading, he asks questions that are irrelevant to the big picture. As an example, if we drive by a bad car accident, he will say, "Who made that car crash? Was it a bad guy? What is his name? Where does he live? Does he have kids?" Instead of being concerned for the people involved and the emotional aspect of what has happened, he becomes obsessed with unimportant details and that prevents him from understanding the big-picture concept.

Dan and I continue to do what we can to understand how Elijah operates. I hope we will always be the best advocates for him in school and in social situations and eventually when he has to live life on his own (gulp). I have had moments this summer where I have literally wanted to put him in a giant structured bubble of total predictability and safety. In my gut I know that ultimately this is not good for him. Yes, it is good to provide as much structure and support as we can but pushing his limits will be good for him in the long run, as it will teach him to be flexible.

I really just needed to vent a bit tonight, so thanks for listening! :) Tomorrow (another big gulp) I will be 39 years old. Why is this so hard for me to swallow? I feel like middle-age is about to swallow ME. Have a great rest of your week!

Monday, July 21, 2014

Sleep-anxiety, Inc.

My tired little boys are in bed after a looong weekend spent at the dropzone. We had a great weekend and even got visits from a few different friends. One group of friends was able to go skydiving (they had so much fun!) and some others were not able to go (the plane needed unexpected maintenance...booo). We also got to spend some time with our good skydiving friends who we haven't seen in a while who were visiting from Florida!

I wish I could report that our weekend was filled with stellar behavior. It was not. It was pretty rough at times. Thankfully Dan was in the vicinity to help with discipline and behavior management. That helped a ton. For the past five nights or so Elijah has reverted to not sleeping well again. He wakes up exhausted and is up constantly throughout the night. A few nights ago the fitbit recorded 42 times awakened in a 9-hour period! Yikes! I have done a TON of thinking about this and so many other aspects of our oldest cutie.

FYI! The rest of this post could be really boring, so I will not be offended if you click away now. It helps me so much to write these details out, so bear with me if you wish to continue reading! :)

I have said so many times over the past year or so that once we get Elijah's sleeping figured out, so many other things will fall into place. I'm beginning to understand that it's not that simple. We have done everything under the sun to get that boy sleeping well and nothing has worked for him on a consistent basis. Here are the things I feel like we DO do well (not sure these things help, but they definitely can't hurt):

- We have a very strict bedtime routine that we stick to every single night, even when we are away from home.

- We keep the boys' bedroom (at home and at the dropzone) TOTALLY pitch black.

- We have two sources of white noise in their room to drown out all outside noise.

- We bought Elijah a weighted blanket (20 lbs!) that I've read helps to calm people with sensory/sleep issues.

- We consistently put him to bed early since he tends to wake up so early in the mornings, no matter what time he goes to bed.

- We make bedtime a totally relaxing, predictable and enjoyable routine for our boys.

From what I have read about both ASD and NLD, most kids with both of these diagnoses have sleep issues due to the sensory and anxiety issues also involved. That tells me that we need to address the anxiety and sensory issues first, and only after we do that will the sleeping improve. We have tried many months' worth of sleep meds that have not worked and that have actually caused more strife than help! I'm not eager to put anything else in his body at this point. He is super sensitive to medication and that has always been the case. Even antibiotics and Tylenol affect him negatively.

So how do we help him with anxiety and sensory issues?

- Routine helps a lot, I think. Summers are NOT good for routines, but we can continue to do things consistently as a family no matter where we are (dropzone, home or otherwise).

- Elijah has so much anxiety surrounding the topic of potty training, so we have to do our part to minimize this. I was reading tonight in an NLD book that kids with this disorder so often have a difficult time prioritizing bodily/emotional needs. It is tough for them to order hunger, tiredness, the need to use bathroom, pain, etc, in their hierarchy of needs. This makes a lot of sense to me. Dan and I have instinctively started having tons more patience with accidents because we are beginning to understand that he isn't trying to make us upset/crazy/mad/ready to run screaming from our home. It can be soooo frustrating and I feel like it would be nearly impossible to be totally calm during the multiple daily issues we encounter. I have really tried to be as cool as possible regarding this topic and I hope we can be semi-consistent with this and reduce anxiety about potty for ALL of us. He IS slowly making progress and I literally need to remind myself about those baby steps once an hour!

- He has some other anxiety triggers that I've been trying to avoid or really help him out with. Getting the tape residue on his arm off from his surgery? Not important (this is a HUGE source of anxiety for him). It'll come off eventually. Watching him suffer through social scenarios? When I'm present, I coach him as much as possible to help ease his pain. Hopefully over time he will begin to hear my voice in his head and find comfort in that. "Elijah, it's ok! He's just a kid! Say 'hello!' Ask him if he wants to play!" I've also tried to be more sensitive to some of his unrealistic worries (OCD-type stuff). Tonight he was really concerned and obsessed about a tiny little pimple he has on his arm. He did not want me to touch it, but he was crying at bedtime because he wanted it to go away. I prayed for his pimple, kissed it and did everything I could think of to give him peace about it (as opposed to making him feel silly about being worried about it).

- Dan and I have learned through reading about NLD that busy environments are really overwhelming for Elijah. It is difficult for him to interpret a lot of visual information on top of tons of noise and other stimuli. For the past few months, every time he is in an overwhelming setting he breaks down. This is usually evident by the hitting, kicking, name-calling, screaming, etc. It can get reeeeeeally really ugly. I've found that when we are in unpredictable or overwhelming environments, I constantly walk on eggshells. Things can make a bad turn very quickly and it can be really challenging to manage, especially if Dan isn't around. I have been trying to get Elijah to recognize the overwhelmed "too much" feeling before it gets out of control. He isn't quite able to do this yet, but I'll continue to point the precursors out to him. Lately I have been providing him with chill-out options when I spy the overwhelmed behavior taking shape. I will let him spend time on the iPad (learning apps only) or a book or a huge mama snuggle (thankfully, he still LOVES this one). Good things have come from this! There is a country-states app on our iPad that he loves. He will sit for hours, learning facts about countries and U.S. states. He can point to the exact location of every single African country on a map! Seriously! He knows WAY more than I do about geography and he has such a hunger to learn it all. I feel like these sorts of solutions are positive outlets for him, so we will continue to seek out other helpful coping strategies.

- I've read a little bit about the Tomatis Method (listening program therapy) and the Alert Program (this deals with self-awareness, which is such a deficiency for Elijah) and I am SO excited to explore both avenues with Elijah, hopefully with the help of his OT.

Whew! I think that's all for now. My brain hurts. It took major effort to get all of that out in a semi-organized manner. If you are still reading, I'll send you a medal for your patience. Thanks for reading and caring and we love you for being here! Have a great week!

Thursday, July 17, 2014

Challenges and some sadness.

I got a bad report from our daycare provider regarding Elijah's behavior while the boys were at her house today. I am so sad and upset about it, but mostly I am sad that there are going to be so many times in Elijah's life when people are not going to understand him or have the patience or time to understand how he perceives the world. I know what he needs better than anyone else, and lately I feel like I literally cannot leave him with ANYONE for extended periods of time without all parties suffering...only because the situation is so complex (NOT because he is a bad kid). He is a truly good person who happens to have incredible challenges to face every day. Challenges that most of the rest of us will never know.

I feel so sad tonight. I had very little patience with the boys and I found myself getting upset about everything. Then Sammy insisted on putting himself to bed, which broke my heart. He read himself a story, said prayers and sang songs all by himself. :( Ouch.

I am always so amazed by and thankful for the way that we are refreshed with each new day. I am excited to see my boys in the morning with fresh eyes (and vice versa). I love them and I hope they ALWAYS know that truth!

To make up for the downer post, I'll give you a few more "funnies" we heard Sammy say today. At separate times when he got upset with Dan or me, he said:
"Whiney kids go to ZOOS!"
"Screaming is NICE!"

Oye. Bring on the sass! :) Praying for winds of change for the weekend...and for a great weekend for you, as well!

Wednesday, July 16, 2014

Musings from a foggy brain

I'm not sure what has happened to my brain lately. I feel like I'm Dori from Finding Nemo or like maybe the brain-eating amoeba that has been in the news lately somehow found its way up my nasal cavity. This latest surgery has left me in a fog! It is nearly impossible for me to remember anything or plan further than a few hours in advance unless I write every single thing down. I completely forgot about Elijah's appointment with his developmental pediatrician yesterday (something I normally would NEVER do) and I have had to continually remind myself of other plans in order to not forget them. I hope this lifts soon, as it is very annoying!

I received a very unexpected treat today! Dan and his mom went in together and got me an early birthday gift: an afternoon at the spa! It was honestly incredible. I got the most wonderful massage, followed by an even better facial. After that was a manicure and a "blow-out" for my hair. I felt so special! I think every mama should get that treat once a year.

Here are a few boy funnies I've been collecting lately:

SAMMY WORDS
construction = instruction
four-wheeler = more-wheeler (love this one)
because = pecause
puddle = peddle
water = gua-gua (he's trying to say "agua" and it's so adorably cute)
Whenever Sammy is upset with Dan or me,  he yells at us, "You're BORING!" :)

NEW ELIJAH PHRASE
Last weekend we had been sitting in the hot sun at the dropzone for a while, so Elijah announced to everyone, "I'll be back. I'm going to 'shade-up' in the hangar." We all loved it!

We have noticed a slight E potty improvement in the past few weeks. He will actually occasionally stop what he is doing to go use the bathroom with no prompting. We haven't seen him do this in sooo long, so it is a small baby step toward being potty trained. On the hearing note, I've been noticing that he is hearing differently. I'm assuming it means it's better overall, but we still have a few weeks before we'll know this for sure. Yesterday in the car he heard a clicking noise in a song that he has listened to a thousand times before and never heard. I hear him say, "What?" a lot more than before surgery, but I wonder if that's because he's hearing more/different sounds?!

Elijah's little friend from first grade stopped by to play tonight for the first time in a REALLY long time. He was sooo happy to see her. One of our very good skydiving friends also stopped by to pick up some baby stuff since she and her hubby are expecting and we are done expecting. It was sad for me! I was genuinely upset about saying good-bye to those things, and also about the idea of being done. :( I'm working through that. The boys get a day at daycare with their friends tomorrow while I edit photos and Dan jumps out of airplanes. The weekend will bring more dropzone time and we even have some friends who will hopefully be able to make their first skydives! I love being able to watch people experience the sky! It is one of my favorite things.

Have a great evening! Next time hopefully my head will be clearer and more organized. :)

Monday, July 14, 2014

Knees in the breeze

The boys and I spent two nights at the dropzone with our daddy/hubby this weekend and it was sooooo good for all of us. The boys loved their time there, as always. Elijah slept GREAT, which was wonderful (Sammy, too, of course). The boys were able to play with friends and run around the perimeter of the hangar approximately 8,000 times. We spent quality time with our amazing friends and that was a big highlight. We adore our skydiving family to pieces!

On Sunday night, after the boys were asleep and the tandems were finished for the day, Dan asked me for the 1,000th time if I would do a tandem jump with him. I have said "NO!" 999 times before. I have made hundreds of jumps on my own, so it has been really hard to imagine giving up that control and freedom. I had a weak moment, or maybe you could call it a moment of strength. I knew I needed to get in the sky and I didn't have time for a re-train. To make things better, the sunset was gorgeous! I think you can tell from the pics that I made the right decision. :)











Now I'm motivated to get my gear in working order and to get in the sky much more often! Dan is home for the next couple days, so we will have some family time together. An incredible friend of ours has offered to come over and watch the boys tomorrow or Wednesday so Dan and I can get away for some alone time. We have more dropzone time coming up this weekend (maybe three nights this time?) and I feel so happy about having the month of July "off." Elijah's ear is healing well and he has been in MUCH better spirits than in previous weeks. Life is good! Thanks for peeking in!

Friday, July 11, 2014

Snuggleday

Elijah had another awesome day! His gauze fell off during the night last night (we were instructed to let it happen on its own) and his incision looks great. He experienced minimal pain today and was in great spirits. He looks better and way less tired to me than he has in months. I'm so happy the "sleep" meds are out of his body.


Dan is in full-on skydiving mode, which means the boys and I are spending a lot of time together and will continue to do so for the next 6 to 8 weeks. The past two days have been strange. I didn't feel like today was Friday...or Saturday, Sunday, Monday, Tuesday, Wednesday or Thursday, for that matter. I literally did not leave the boys' sides even for a second today. We did HOURS of snuggling and even more hours of playing. I refuse to forget about the blessings! I'm feeling super grateful and overwhelmed and I am doing the usual post-surgery sorting-through of feelings, events and answered prayers.

If all continues to go well, the boys and I will head to the dropzone tomorrow. We are all looking forward to it. Have a great weekend! Thanks for stopping by.

Wednesday, July 9, 2014

Thankful.

Today was a pretty incredible day, and I found myself constantly feeling thankful. We did not know what to expect coming into this surgery. We would rather forget about the last ear surgery, and we didn't know if all or any of that chaos would happen again. We are SO THANKFUL that this was a completely different experience.

(My dad and stepmom have gotten a couple Piggie-Elephant books for the boys and they LOVE them! Elijah insisted on bringing both books with him to the hospital yesterday. He literally snuggled with them before and after surgery....arms wrapped around them while he drifted in and out of sleep. :) Today he wanted to pose for a picture with one of them.)


Elijah had a great day! He woke up feeling good, eating and drinking A LOT and keeping it all down. He played almost at his usual pace, and in true fashion was sassy when interacting with his brother. He complained of mild pain twice, but we began a tylenol-advil schedule that seems to have taken care of any discomfort. We changed his gauze once today and his ear/incision look great! No fever, no dizziness, lots of crazy hair and a big happy smile on our spunky and resilient oldest boy!

I could tell Sammy was happy to be with his family today (the feelings were very mutual). I got lots of hugs and snuggles. After I had put him down for a nap, he called me into his room. "Mommy! You forgot to give me LOVE!" He wrapped himself around my arm and would not let go. "I love you SO MUCH, Mommy. You are the best mommy EVER. I love all of our family." I love that little boy! He is so funny and cute and independent and awesome.

I feel like it would be so easy to forget about the blessings (MIRACLES) that have been thrown our way. Once things are "okay," it is easy to settle back into a routine and forget about answered prayers. Today, I haven't allowed myself to forget. I keep reminding myself to be extra thankful. I keep thinking about where we were at on Day #2 last time and how Elijah couldn't walk in a straight line for many weeks after that surgery. I keep reminding myself about what the doctor told us yesterday. He said that if another surgeon were to do this surgery not knowing E's history, he/she would probably have no idea that his footplate was at one point totally broken in half. Yesterday it appeared to be totally healthy and filled with fluid, which is a miracle based on the reactions we've seen from the doctors and nurses (apparently cracked footplates don't "just heal"). I keep thinking about how many times Elijah has had to endure tape being painfully peeled off his arm and needles poked into him and on and on. And yet he continues to smile. When I think about all of this, his anxieties and struggles make so much sense. I want to never forget any of this and to keep it all in perspective! Please remind me of this when I am struggling to understand something or another! :)

Yesterday Elijah asked questions and made comments that we have never heard before. Here are the ones I can recall:
"Am I going to die?"
"I'm scared."
"I don't want to be alone."
"Will you and Daddy be with me the whole time?"
"After I go to sleep with the mask, will they put the tube in my throat?"
"Will you and Daddy wait in a different room while I have surgery?"
"I miss Sammy! I want to be with him!"
"Why does my throat feel funny after surgery?"
"Will you be there when I wake up?"
"When Daddy comes into the surgery room with me, is he a nurse?"

For the first time ever, he was thinking ahead and also expressing feelings surrounding surgery and time in the hospital. He has not ever done this before, not even a little bit. I never want my boys to worry, but this is definitely a sign that Elijah is maturing! I wonder if he has just been unable to make sense of these things in the past and is finally able to express the words/feelings verbally. It makes me a little sad to think that he has perhaps been holding all of these questions/thoughts in because he has been trying to make sense of them. At any rate, I was happy to hear him rattling off questions and I am MORE than happy to provide answers!

If my surgery equation is correct (one week of healing is needed for every day spent in the hospital), we should have another 6 days before we are back on track! We do not have much planned in the next few weeks and I did that on purpose. Hopefully there will be lots of time relaxing at the dropzone and time spent together and with friends and family. After a few months of TONS of activity, I'm looking forward to a laid back July!

Thanks for checking in! Wishing you all a wonderful week!

Tuesday, July 8, 2014

Home with a vomiting asterisk

We are home! Elijah has thrown up a handful of times since leaving the hospital, so we are on dehydration alert. Dan and I both feel like it is anesthesia vomit as opposed to inner ear vomit (this is a good thing). We are hoping his tummy will settle overnight and that he will feel much better in the morning. It took him a while to wake up after surgery. He was soooo groggy and sleepy.


Around 4:30 we woke him up to give him juice, just so we could see if his tummy could handle it. He had nausea for most of the rest of the time we were at the hospital, but he didn't throw up until we left.


As always, the worst part of the ordeal was taking the tape off of his IV. Oh my goodness, this is so highly traumatic! I am personally going to invent something that can allow doctors and nurses to bypass having to place tape directly on skin. There just has to be a way! Without this, I think he would have had very minimal anxiety. One of my two favorite lines from the day occurred while the nurse and I worked on the IV tape. Elijah said, "This is NOT ok, Nursey!" :) My second favorite line was said on the way home. I sat in the back seat next to him because he wanted me to hold his head while also holding his puke bag up to his mouth. Then his left eye started to itch, so he wanted me to hold his soft blankie up to his eye. He saw that I couldn't do all three things, so he said, "Can you PLEASE have three hands, Mom?!"

We wheeled Elijah to the car as he held a bag to his face, just in case. He actually moved the bag aside and smiled when I took out Dan's phone to take a picture. That's our boy! 


We will watch him closely through the night. Hopefully his tummy settles and he will feel a ton better in the morning. He hasn't felt any pain yet, so we are hoping we keep that under control, as well.

We're also praying that the prosthetic device Dr. L placed in his ear will restore some/most of his hearing! We won't know this for a few weeks, but we will pray hard in the meantime. That's all for tonight. Please forgive me for any typos or things that may not make sense. We are tired! Also, grateful (for so many things) and ready for a new day tomorrow. Thank you for PRAYING and for checking in on us!!

Surgery done!

Whew! Less than three hours later and Elijah is out of surgery! We just talked to Dr. L and for the first time ever, he told us, "Everything went great!" We've sort of gotten used to seeing the long face, followed by hard news. E's footplate appeared healthy and normal, which is a total miracle considering the state it was in a year ago. He was able to place a total ossicular replacement prosthesis and he hopes this will restore some/most of Elijah's hearing. There is a possibility that it won't, in which case they can try again to connect things (if they need to do this, they could do it through the ear canal which is good news since they've had to cut an incision behind the ear and go in that way the past 3 times). But hopefully we won't have to worry about that and hearing will be restored on some level.

He is in recovery right now and they are waiting for him to wake up. When he does, we'll get to go see him. Since Dr. L didn't need to mess with the inner ear at all, we are hoping for no nausea/dizziness this time. It's possible we could get home yet tonight, but we'll play it by ear. Ha!

Great news from the OR!

First update from OR: NO cholesteatoma regrowth. YAY!! This is wonderful news. Elijah is doing great and they are going forward with prosthesis placement. Please pray for success with this and a smooth rest of his surgery. THANK YOU! Prayers really cherished right now.

In the OR

Here's a loopy Elijah snuggling with Murray the therapy dog before surgery. He got to meet this sweet puppy the last time we were here, so it was a special treat to get love from him again.


Elijah was sad to be here this morning. He kept saying that he wanted to see Sammy. :( He stayed busy with playing and reading books until the Versed kicked in and he couldn't hold his head up anymore. Dan went back to the OR with him around 11:35 to make sure he was as comfortable as possible. We are hanging out in a private waiting room now. Surgery is expected to take 4 hours. We are waiting for our first update.

Please pray for a successful surgery, NO cholesteatoma regrowth, no nausea/dizziness/vomiting and for restoration of hearing! THANK YOU!

Monday, July 7, 2014

Super fun weekend with friends and surgery tomorrow.

The little boys and I spent a day at home after spending a super fun weekend with our awesome Texas friends. We were so sad to say good-bye to them this morning. I feel like we gave them a very accurate "slice" of our summer lives in the three full days we spent together. The kids had so much fun playing, no matter where we were at. The Legos and blocks (and snuggling) were huge hits while we were at home.


On Friday, our first full day together, we went to Minnehaha Falls and let the kids run and play. We had a picnic lunch and walked along the roaring rapids. I didn't get a single photo while we were there because Elijah had a really rough stretch, which I'm happy to report was the only "really" rough stretch of the weekend. 

On Friday afternoon we headed to a lake near our home to take part in the 4th of July festivities. Here are 4 of the 5 kids walking hand in hand. So sweet!


Elijah and Gracie have a special bond since they are both heart survivors. They are drawn to each other, which is so sweet. On our walk to Round Lake, Elijah wanted to hold Grace's hand and didn't want ANYONE else to hold his other hand at the same time. It was a Gracie-Elijah-ONLY moment for him. :)



Grace, Bennett and Maggie are the cutest, sweetest, kindest, most polite kids. I fell totally in love with them this weekend (their parents, too!).  

The kids jumped in many a bouncy house that evening and ate deliciously greasy-yummy food and played their hearts out. We made a spur-of-the-moment decision to have Dan take Elijah home a bit early so he could get some rest. That meant that he would miss fireworks. :( I was so torn about this. I always want our boys to experience everything they can. But...making sure Elijah gets his sleep is so super important these days. He seemed ok about leaving, and it actually brought a silver lining....no, TWO silver linings! On Dan's/Elijah's way to the car, they ran into my good friend Pam and her family so I was able to connect with them after Dan texted me about running into them! And...Elijah got an extra two hours of sleep.

The next morning we went to a beach/splash park and ate lunch at a yummy burger joint. After cleaning up, we headed to the dropzone. This is how the kids felt at that point..


Every kid except Sammy fell asleep on the ride to the dz. Jennifer made her first skydive with Dan and loved it! I am always so happy to share the sky with people! I think I got an adrenaline rush off of her adrenaline rush!


After jumping, we grilled out and cooked s'mores and attempted a few fireworks (before freaking 60% of our children out and stopping). ALL of the kids slept really well that night. We sufficiently wore them out.

The next day was church (sooo thankful the Coopers came along with us!) to listen to Dan's dad preach (super awesome message) and then we headed to the Mall of America. It was nuts, as expected. Here is Elijah, studiously perusing a map while the kids waited for the carousel.



Gracie and Elijah had a blast on the "fast cars" together! I love this pic. :)


And that was sadly the end of our journey! Our amazing friends left to head back home early this morning. Elijah cried genuine tears when they left. This was the first time I have EVER seen Elijah express true emotion about missing someone. He cried in my arms for at least five minutes, sobbing, tears falling onto my arms, as he said, "I misssss Graaaacieeee...." over and over. :( It was so sad, but Dan and I were both happy about the true emotion that he expressed. This is not typical for him. I never want my boys to feel sadness, but knowing that E feels that kind of emotion is a good sign.


Sleep/behavior in a quick nutshell... We had stopped the Clonidine (sleep med) and started a low dose of Valium almost two weeks ago. We got a fitbit and had E wear it on his wrist overnight to monitor his sleep. On the nights we were able to put him in bed by 7:00ish, he was actually getting 9.5ish hours of sleep/night. That is decent sleep! That told me that when he woke up looking like a completely wiped-out zombie, it was likely the meds that were affecting him. Dan and I made the decision to stop giving him the V mid-last week. Since then, we have seen only one major behavior incident (at the Falls on Friday) and a few minor issues. He looks much less zombie-ish and seems overall much more well-adjusted. This morning he slept in till...are you ready for this? 7:00am! This literally NEVER happens! We are still seeing him purposely try to anger us on occasion, but it gets out of control much less often. I am on the anti-med train for now. To be continued.

Ear surgery #3 is tomorrow at 11:00! We have NO idea what to expect. We are praying hard for a much better experience than last time. I'll do my best to post timely updates. It is so super easy to write something quick on Facebook, so glance there first but I'll eventually get it here. I feel like I haven't seen Dan in ages since he has been working so much, so I'm off to relax with him for a bit before bed. Thank you for checking in and I hope you all had a safe/fun holiday weekend!

Tuesday, July 1, 2014

The most random post in this blog's history?

Today was a MUCH better day than yesterday! Thank goodness for that. The boys slept well in their own beds and woke up feeling better than they did the day before. Tomorrow will be even better than today. Every night spent in our own beds is better than a night spent in another bed, right? Or something like that.

As the title of this post promises, I am about to be very random.

Here is a photo of the boys posing in Dan's "office." Elijah LOVES going fast, so maybe one day he will skydive?! Sammy, on the other hand, does not like going fast AT ALL. He's a self-proclaimed slow guy. "I like to go slooooww," he says to me often. Slower, Mama, slower..slooooow down...


Pilot Elijah! One day...you never know!


Dan took this photo of me at the dropzone last weekend. We are beyond "knee-high by 4th of July" this year!


I was sorting through some of Elijah's school/medical papers tonight and came across this binder. This is about a year's worth of medical documents.


And, uhmm.. so, here is Dan! Totally...TOTALLY normal. He left the house like this tonight and went to a public place to purchase gasoline for our car. Yep, it's true!


I actually have a lot on my mind about new strategies Dan and I have talked about implementing to make life easier for our family. In the meantime, I wish to sleep! And work! And clean! And prepare to have guests at our house!

The next few days will be filled with excitement, activity and fun! We are super excited for our Texas friends to arrive. Have a great week!