Empty Tanks and Boys I Love

After finally feeling so much better last week, I managed to cram WAY too many things into our schedule and ended up burning myself out. By Sunday night I was a mess and things unraveled. Elijah had a major meltdown, the dish I was supposed to bring to Life Group tasted horribly and I felt like screaming at everyone. On our way to Life Group Sunday night, we made the decision to turn around and go back home. WHY do I do this to myself? When I'm feeling good I try to do it all and then suddenly my tank is way past empty. Then I either get sick or need to sleep it off. Then I feel better and it starts all over. HELP! :)

And then I walk in on moments like this and feel so happy..

Buddy and I had a rough day. I kept thinking about all of the work I could be doing but can't because of his chewing and his need to get out so much. I was frustrated and I know he senses that. When the boys got off the bus I saw that Elijah was wearing different, foreign pants and I knew that meant there had been a significant accident at school. My heart sank. This has been an issue again recently and it makes my mama heart so sad. I know this has to be affecting his relationships at school (I had to witness some teasing firsthand) and I just want him to WANT to take control of this. I know that he does everything in his own time and that we will get there, but in the meantime it is very, very frustrating.

Since it was Elijah's last OT visit for a while (more on this in a bit!), I decided it wouldn't hurt to bring Buddy on our journey and let him chill in the car. Thirty seconds down the road, Buddy was crawling BEHIND me as I was trying to drive. Then he was digging in my purse for an old cracker that he smelled. I turned the car around and drove like an angry maniac back home and put him in his kennel. I was frustrated and both boys sensed it and turned on the good behavior and sweetness. The rest of the day was a breeze with them.

Elijah graduated from Occupational Therapy today! His OT felt like he has been doing so well with everything that we can take a significant break. We are planning to take the rest of the spring and entire summer off and re-evaluate in the fall. This is great! It means he has made tons of progress and it also means we free up an extra night every week.

With Elijah in his last OT session for a while and Buddy at home, I thought Sammy and I needed a mini-date. We went to the nearest coffee shop and enjoyed some one-on-one time together. We played the question game and I told him how VERY special he is to me, even when things are crazy. Our time together was so special!

Once Dan got home tonight I was able to put the dishes AND laundry away! Wooo! Exciting! :) Tomorrow will certainly bring new adventures! Thanks for peeking in.

Desperate times...

What a weekend! We celebrated Sammy (again) this weekend, this time with extended family and friends. Sammy requested a COW theme for his party (I love this), and of course we complied. I love that he chose something a little bit off-the-wall. He was super excited to have a few friends attend this year. His daycare buds are the BEST!

These four cuties have been going to the same daycare since birth. The boys LOVE these girls! They are the sweetest little things and I'm so glad they have such a special bond with one another.

Birthday bro hugs. :)

The cow piñata got a beating.

And today we broke out our pool for the first time this year. The boys had a blast! Sammy is so much braver than ever before with water and trying new things. I'm proud of him!

In all honesty, it has been rough going for our family. Elijah is really struggling again, the boys have not been getting along and it seems like there is often some sort of turmoil in our home. Potty issues have regressed hugely, which has all affected sleep and sanity. I know that better times are in store, but until then we are spent.

This will be another crazy week, including three doctor's appointments, three therapy appointments and swim lessons. I think I just need to accept the fact that life will always be nuts!

Elijah started seeing a child psychologist on Friday and I will take him to see her weekly for the next few months. She is AWESOME! Our hope is that she can help him learn some coping techniques that will lessen anxiety and frustration.

You can see from these photos that we had a few moments of summer-time peace today, thanks to Dan and his bubble-making.

Dan and I have had to get extreme recently. Behavior, potty and sass have been OUT of control, so we have taken away ALL technology until we see an improvement in behavior and sass. And every time there is a potty accident, we take a toy away from E. To earn one toy back he needs to use the toilet successfully all on his own. We are going to keep with this until we see improvement!

Early to bed tonight. Thanks for peeking in! Have a wonderful week!

Okoboji family reunion 2014 and a visit with the developmental ped

We are back from our 2014 Okoboji family adventure. It seems like our trip went by so quickly. Dan was able to be with us for the first few days, but then had to head back to work in the sky. The boys and I missed him terribly after he left. They said about a hundred times, "I MISS DADDY!" We had plenty of distraction, though, with tons of family surrounding us constantly. Elijah and Sammy have some older second cousins who lavish love upon them. We spent some time on my uncle's boat and Elijah particularly was in HEAVEN. Oh my goodness that boy loves to go fast. His arms were flapping a hundred miles a minute with a huge smile smeared on his face as he screamed, "GO FASTER! FAAAASTERRRR!" The boys also got some partial lake time. It was only partial because Elijah has not been cleared by ENT to swim yet (hopefully this will happen tomorrow). 

Dan had to leave before the bulk of the family arrived, so he missed out on family photos. :( We were able to capture a bunch of family shots, including this one of my dad/stepmom, older brother and us (minus Dan).

We had an incredible time, but it has felt so good to be at home. I don't think I've ever loved my home/bed so much!

Today we brought Elijah to see his developmental pediatrician, the incredible Dr. M. We chatted about a few key issues: Elijah's inability to prioritize bodily functions/needs, his lack of self-awareness, his anxiety and his lingering potty issues. Oh how I appreciate smart doctors. A few things that he said today struck a chord since these are thoughts/realizations I've had recently.

When we described E's impulsiveness and tendency to break down easily, he said something along these lines: Elijah requires so much energy and patience and control just to get through every day. Every little thing is either overwhelming or confusing for him, and that depletes his resources. So basically, he is at 211 degrees all the time. When the littlest thing happens, he reaches boiling point and explodes. To us it may seem like a minor issue, but for him it may be the thing that breaks him. I did a really good job of holding back tears as Dr. M spoke these words. It makes me feel so sad that Elijah is running on empty basically all the time, struggling with every little thing that comes his way. We've of course known all of this for some time, but it was somehow different hearing it from the doctor.

Dr. M also mentioned how Elijah's tendency to rely on facts is significant. It tells us that he feels out of control most of the time and clings to facts in order to feel secure. So much of his life feels uncertain, so he thrives on talking and learning about concrete things. Geography, history, time, birth dates, ages, schedules, events...these are all things he talks about CONSTANTLY. At one point during the appointment today Dr. M looked at Elijah and said, "I love your tie!" (He wore his Easter tie to the visit.) Without missing a beat, E replied, "Thank you! I love yours, too!" Dr. M made a comment that even though that is probably a learned thing, it is a great sign that Elijah is able to reply in such a way that makes people want to engage with him. A step in the right direction and a tiny sign that our efforts are making a difference.

We also chatted about potty. His thoughts were encouraging. Bottom line: be patient. Eventually E will be able to move this up on his list of priorities.

Dr. M recommended that if E has trouble in school again this year, we should consider putting him on an SSRI to take the edge off his anxiety. In the meantime, we will just keep doing our best! Early bed times, mapping out our weeks on the white board, getting him sufficient sunlight, disciplining consistently and LOVING him so he feels secure and safe.

Tomorrow we have post-surgery follow-up with ENT and our first appointment with Fraser (super hopeful/excited about this one). Elijah and Sammy get to spend an entire day on Saturday with their awesome Grammie and Gramps while Dan and I work. They are so excited!

Thanks for checking in!! Have a great week!

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. :)

The perfect un-perfect storm

I'll start with a Sammy funny from yesterday!

Sammy (as he stuffs a gummy worm into his mouth): Sometimes I like candy and sometimes I don't like candy.
Me: Really?! When do you not like candy?
S: On Tuesdays. 
Me: Well today is Tuesday.
S: Oh. Except today. Just on other Tuesdays.

Elijah could use prayer right now. There are a handful of factors at play (lots of summer activity and being overwhelmed by lack of schedule, sleep issues, anxiety, weaning off meds), all feeding off one another and creating quite the "perfect" storm in his mind/body. Things feel very overwhelming and complicated at the moment. Here's a small but complicated piece of our daily routine, as an example: Potty issues have regressed in a huge way recently. Elijah uses the toilet independently 0% of the time. If we don't tell him to go to the bathroom, he holds everything in until an accident occurs. Lately he has been super anxious and his tics have been worse than ever, so his body is constantly tense which doesn't help potty issues. I have been putting him to bed extra EXTRA early because here is what happens at night.. Ten to fifteen minutes after he is in bed and his body finally relaxes a bit, he poops. But he doesn't tell me, so I have to check on him every few minutes because he will not fall asleep until he is cleaned up. Once I clean him up, he will fall asleep. This is at least a 30-minute ordeal. And it has been happening every single night.

We almost have him completely weaned off the "sleep" meds. We actually have an appointment with the sleep doctor tomorrow. Please pray for miraculous insight/help!

My gut tells me that we need to get sleep and anxiety under control first. We have a pretty good handle on what he needs on the NLD front. We need to get him to a more rested/peaceful place and go from there with NLD strategies.

Someone asked about E's upcoming surgery and what that will entail. The surgeon will check for cholesteatoma regrowth and remove it, if necessary. He will also place a prosthesis inside his ear with the hope of restoring hearing. I'm not sure how exactly the "wiring" will go, and the doctor didn't seem entirely sure, either. It'll be a play-it-by-ear kind of situation. Ha!

Super exciting things are coming up in the next few weeks (surgery excluded)! Will share soon!

Potty revelation

Ever since Elijah was diagnosed as having a Nonverbal Learning Disorder, we have been doing our best to learn to think the way he does. It's not easy! He processes information in such a unique (to us) way, and it has been really difficult for me to understand that I need to change the way I interact with him. I find myself doing the same things I've always done, and getting the same results I've always gotten.

Over the past week or so, I have been thinking a lot about potty training and how we are basically in the same spot with E that we were two or even three years ago. I've felt in my gut that this just HAS to be related to the NLD. Something isn't connecting. The ONLY time Elijah uses the toilet is when we ask/tell him to. Before this week, he literally never went on his own, which has resulted in soooo many accidents and tears, and so much frustration over the years. Oh you guys, you have no idea how much poop and pee Dan and I have screamed and cried over. It's been such a grueling and long road in that department.

I had the thought a few days ago that first and foremost we need to get him to LISTEN TO HIS BODY before anything else. For two days, I set the timer on our microwave every 10 minutes. When the timer went off, I'd tell him to ask his body, "Do you need to pee or poop?" We even came up with a fun gravelly voice that his body uses to respond back to him. "No Elijah, I do not have to go pee or poop right now." A couple times a day, his body would actually say, "Yes! I do have to go!" and he'd run off to the bathroom.

For the past few days, instead of using the timer I've just been asking him about every 20-30 minutes what his body is telling him. He has continued to use the toilet ON HIS OWN when his body tells him it has to go! This is incredible! A couple times he has even done the body check on his own, without my prompting, followed by a trip to the bathroom. And get this! Today after school he told me that he did a body check during school and his body told him he had to pee. He raised his hand and asked his teacher if he could go to the bathroom. She said no. Darn. He asked again and she let him go. MAJOR SUCCESS! All along we've been dictating when he uses the bathroom, not teaching him that he needs to listen to his body first. For most people this is something that comes naturally, but Elijah needed for us to tell him what step 1 was. COMMUNICATE WITH YOUR BODY.

This morning we were in a hurry to get out the door, so without thinking I told Elijah that he needed to go potty QUICKLY. He started crying and yelling, "BUT I DON'T HAVE TO!" and flopping around on the floor. This is a typical scenario in our home that has gone down about 3,000 times over the years. We fight over using the bathroom many times/day. I started doing what I normally do. I gave him a choice: go potty or sit in a chair by himself until he's ready to go. I started to walk into the bathroom when I heard him say between screams, "Mommy, snuggle me!" I stopped, turned around and knelt down and gave him a huge, hard hug. Once he calmed down I told him I didn't blame him for being frustrated and confused! For the past few days I'd been telling him to go to the bathroom when his body felt like it had to go. And now I was telling him to go when his body didn't need to! I explained to him that there are two times that we go potty. When we need to and when we know we'll be away from the house for a while. I think he will just need to hear these two rules spoken to him a number of times, and then he'll be able to categorize Potty Rule 1 and Potty Rule 2.

I've also taken a different approach to his "okay" and "bad" days at school. Instead of expressing immediate disappointment and removing privileges like I used to, I'll now sit down with him and calmly ask what his teacher didn't like about his day. He is MUCH more willing to tell me details when steam isn't pouring out of my ears. "Some other kids were telling me to do blurt-outs and I did!" Having specific details, we can sit and talk about strategies to make things better the next day. "If your friends tell you to do that again, tell them 'no' and then raise your hand and ask for help."

Another thing I've started doing is instead of freaking out or giving threats when I hear potty talk or bad words, I will offer an immediate alternative. So far it's working great! Tonight I heard him get frustrated and say, "STUPID!" I said, "No, that's icky. How about 'fiddlesticks!'" and he happily repeated it. As the doctor told us and as I've been reading, we need to repeat positive things to him CONSTANTLY until they become ingrained. I've also been rewarding him for positive responses/reactions with computer/iPad time or candy or playtime/coloring/legos or anything he enjoys.

Slowly this is all making more sense. It feels good to grasp even a tiny bit more of it each day! I've started reading a book about NLD that is super helpful. I'd love it if everyone who cared about/for Elijah read it, but instead I'll just offer up a synopsis when I'm done. :) Today was a MUCH better day than yesterday. I think God knew I needed a day of progress and positivity.

The boys are in bed, so it's relax-time for me! Have a great evening!

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!!!

Working toward goals

Sammy, please oh please forgive me someday when you see this photo and realize that I have shared it with the world. How can I not share this?! It is the cutest!

Sammy does not yet sit on the potty very much. It is quite the ordeal talking him into willingly getting his bottom into the bathroom, so we have not made a huge deal of it yet. The other day (during the snapping of the above photo) he actually went potty while sitting on the toilet for the first time! A step in the right direction!

Elijah continues to make progress in this area. I am hesitant to get too hopeful because in the past I have gone to that hopeful place and then been really let down. As with everything with our oldest boy, lots of extra time is needed and I am learning to respect the whole process which may end up making me the world's most patient person. :) Our boys are both such amazing little people, and Dan and I do our best to focus on our love for them over anything else.

Dan and I had a lightbulb moment this week in regards to Elijah's behavior and seemingly constant and never-ending tiredness. We "removed" his naps about a year ago, but since then we have occasionally had him lay down for naps on days when he has seemed extra tired. In recent months, we have had him take naps three to four times a week. The days when Elijah has seemed extra tired to me are the days that we typically received concerned notes from his teachers or when we have had extra battles with every little thing. In the past few months I have said many many times to Dan, "WHY is he constantly so TIRED?!"

So this week I had the thought that his naps were disrupting his night-time sleep enough to make him constantly tired. We stopped giving him naps cold turkey and ever since he has been a completely different kid. We still fight the occasional battle, but overall he is so much more easy-going. If he starts to talk back or say something that isn't kind, he is able to turn it around (which is nearly impossible when he is tired). We are putting him to bed basically immediately after dinner and bath every night, but if that is what it takes then we will keep doing it.

Thanks for checking in, friends! More later! Other duties call, which I can reveal soon! :)

Cardiology visit and more

Dan brought Elijah to see our beloved Dr. G today. All I got from Dan regarding the appointment was that "everything looks good!" I asked him, "No specifics?" "Nope! Everything looks good! We need to come back in April." So we will go back in April. We are extremely thankful that everything looks good with our steadfast boy. :)

Life has been an absolute whirlwhind lately, and thankfully the end is in sight. Another week or two of this madness and we will be able to breathe a bit. I am looking forward to organizing our kitchen (again) and doing some baking for my food blog and thinking ahead to Christmas for the first time in years. I had another fun opportunity come up for work, but that won't start until the end of November. More on that another time!

The boys have kept us very busy. Elijah has Art Class on Mondays, PT/OT on Wednesdays, swimming lessons on Thursdays, Not to mention kindergarten every morning. Potty business has been going better overall. Accidents are fewer and farther between, and spontaneous toileting (no prompting from us) occurs on occasion. This is an improvement. We still deal with challenging behavior from Elijah at times, but it is almost always when he is overly tired. We are back to having him take naps on days when it fits our schedule. This helps his behavior tremendously. On his good days, we have noticed some maturing. For the past few days, when I say, "Elijah, please go potty," he will occasionally say, "YES! Ok! Yes, Mom, I will!" Of course, he knows this will get him major praise, and perhaps a treat, but that works for me. Slooooooowly but surely, we are getting there.

With Sammy talking so much right now, I have been thinking about how totally different Elijah was at his age and in so many ways. He was just starting to utter his first words at two-and-a-half years old, whereas Sammy is talking in complete sentences. The only reason I make the comparison is to remind myself that Elijah's timeline is way out of the "normal" range, and for very good reason. He has endured his fair share of challenges! This helps me have major potty patience, and overall patience with him when things get rocky. I know I've said this before, but he and Sammy are going through similar stages in so many ways. Being three years apart in age, this is kind of crazy but it really does help me to keep things in perspective.

Speaking of Sammy's speech, this is what he said to me as I got him out of bed this morning: "Hi Mommy! I like your hair! It's really shiny!" :)

There are so many things our boys do and say every day that make me smile and that melt my heart into a huge puddle. I hope to always remember this precious time because I know one day I will miss it. Even amidst the chaos, I love it.

Tomorrow is Halloween, so I am sure we will have some fun photos to share. We carved pumpkins earlier this week. I got Elijah's choice finished on Sunday and Dan got Sammy's done yesterday. Elijah is excited about wearing his Spiderman costume, but Sammy has not allowed us to put his robot costume on him yet. We will see how he does with it tomorrow.

Thanks for checking in! Have a fun and safe Halloween!

Croup: Season 5, Episode 1 (Elijah) ...and a few other thoughts

I was hopeful that we would make it through August and September without having a single croup episode. With literally hours left in the month, Elijah woke up with a raging case of croup during nap-time today. This is only the second time he has had an episode during the day. Dan was at work, so my shaking hands and panicked heart got him downstairs and gave him an epi neb as quickly as I could. The last time he had croup was pretty traumatic, so I have been a bit of a mess since this ordeal. He had a very hard time calming down, which always makes the situation worse. It took a good 15 minutes of the neb before things got better. He no longer had stridor when he was breathing normally, but I could hear it when he coughed or cried. Which meant that another episode tonight wasn't out of the question.

Dan is at the ER with him now, in hopes that the doctor will give him a shot of steroids. I know my boy and I know in my heart that if he doesn't get steroids, we will be up with him again in the middle of the night.

Croup aside..
Things are a little bit tough right now. Our work/life situation is taxing, but on top of that the boys are....difficult. I adore those two monkeys to PIECES. They are my wonderful little people. They sure know how to make Mama crazy, though! :)

On the way home from the dropzone today, I just about lost my mind. I will give you an idea of why...

[Imagine, amidst the following conversation, Sammy periodically SCREAMING at the top of his lungs for no apparent reason. Weee!]
Elijah: Mom, what's this song about?
Me: I don't know, listen to the words and see if you can figure it out!
E: Mom, what kind of truck is that?
Me: A semi-truck.
E: What's it called?
Me: A semi-truck.
E: Who is driving it?
Me: I don't know.
E: What's his name?
Me: Jim.
E: Where is Jim going?
Me: Probably to deliver something.
E: What is he going to deliver?
Me: Tables.
E: What kinds of tables?
Me: I don't know, honey.
E: Oh. What city are we in?
Me: Bloomington.
E: Who lives in Bloomington.
Me: The Mall of America is in Bloomington.
E: Who else?
Me: I don't know.
E: Who is "him" that they just said in the song on the radio?
Me: I don't know.
E: Who is he singing about?
Me: I don't know, honey.
E: What is Cities 97?
Me: A radio station.
E: What kind of radio station?
Me: [silence....]
E: Mom??

And on and on and on..

Kinda funny, but not so funny after hours of it!

I was thinking today, in between answering a million questions, how Elijah has been late in achieving so many milestones. Not just late, but really late. He started crawling at 21 months old. He started saying his first few words at 2 1/2 years old. He started walking at 3 years old. He was a total angel baby and didn't have a single tantrum until after he was 3. So, I was thinking, why would potty training be any different? He was late out of the gate. This potty thing may not be a total defiant/control thing with him. Yes, it is somewhat, but not totally. He is just taking a really long time. Just like everything else.

The thing that throws a wrench in that theory is his cognitive/academic skills. He knew his letters and numbers before he was 2. He has always had incredible retention and memory. He started to read short words at 4, and is reading almost everything at 5 (tonight he read the word "illustrated" with no help). So why is he so far ahead in this area??

I'm not really looking for an answer to that question, but I am glad I have taken the time to think through it all. It has given me a renewed patience with potty training. I have to constantly remind myself that he IS making progress. SLOWLY. But progress is happening over time. I remember wondering if he would ever crawl or talk or walk or enter his "terrible twos." And guess what. He did all of those things!

That leads me back to.... the "terrible twos." In many ways, I think Sammy and Elijah are in the same stage with their behavior. Sammy has started hitting and screaming his head off at inopportune times and doing the things standard for his age. Elijah is right there with him, doing his own rebellious and dramatic performances.

Despite the challenges, I love our little family. I love all three of my amazing boys to pieces. We are a very blessed family and I wouldn't change a thing.

I will end with Elijah's list of specialists, which I wrote up the other day after hearing about his failed hearing test and anticipating having to possibly (and very sadly) add another one. Thanks for checking in! If you have room on your prayer list this week, please pray that Elijah's hearing test this week shows improvement and that whatever is causing his loss of hearing is fixable/curable. Thank you!!

Primary doc
Cardiovascular surgeon
Cardiologist
Pulmonologist
Urologist
Neurosurgeon
Neourologist
Dermatologist
Physical Therapist
Occupational Therapist
Speech Therapist
ENT doc
Opthamologist
Geneticist
Audiologist (??)