Monday, June 30, 2014

Back with the bad.

It is probably not the best time for me to sit down and write an entry because I'm feeling disheartened and sad tonight. The boys and I stayed overnight at the dropzone last night and I think Elijah got maybe a couple hours of sleep. Today was an all-around ugly day that I would love to erase from all of our memories. Thankfully Dan worked, so June 30th, 2014, can remain untainted in his mind! :)

I won't share Elijah's struggles because they were too ugly to report. But I will share about one of Sammy's meltdowns because someday this is one I may laugh at. He "really really really" wanted a cereal bar with his dinner (he is addicted to cereal bars and could eat them non-stop throughout the day), so he set one at his spot on the table. I put dinner on the table, opened the cereal bar and cut it in half, giving one half to each boy. When Sam saw that I had given part of it to Elijah, he started screaming. "THAT'S MIIIIIIINE! I WANT IT ALLLLLLL!" He took his half, threw it on the floor and.....STEPPED ON IT! I couldn't believe it! The following 20 minutes involved wall-punching and kicking, screaming like I've never heard, mommy-punching and kicking, name-calling, trying to run away from home (out both doors) and throwing a stool across the kitchen. All because I cut a cereal bar in half.

Tomorrow is a new day. Thankfully Dan has the day off work. Today was further proof that Elijah NEEDS to get his sleep or he cannot function. We have only been to the dropzone twice this summer, so it is once again "novel" for him (which always equals terrible sleep). And Dan and I think that the older he gets the more difficult it is to acclimate to new/different-from-home places (an NLD thing), which is kind of a tough thing for me to swallow since I love summertime adventure so much.

Speaking of NLD, I was reading some things on the internet today and found a few interesting tidbits.  If you are interested and have a few spare minutes, read this post. It is an interview with a successful man who has NLD. I read through a few of his quotes a handful of times. A few that stood out..

Information cited from
and quoted from Peter Flom, PhD

"I have a lot of traits -- and NLD is probably the problem that fits me best, but I have traits of autism; I have traits of areas where I'm gifted; I have things in common with Asperger's people. And I tell people I have 100 percent diagnosis of being Peter. And every kid, every adult, who has a disability of any kind, really, has a 100 percent diagnosis of being them. Nobody, or just about nobody, fits the profile of anything exactly."

"But this sort of -- I think a great thing is -- for people with NLD, for people with other learning disabilities too -- is I say it's like a way around the mountain. Like if a disability is a mountain between you and where you want to go, then there's a couple things you can do -- or four things I think. You can ignore it and say, "I didn't want to go there anyway. I'll just stay over here." That doesn't work too well, usually, because you really do want to go to the other side of the mountain. Then you can try to go through the mountain, which I would say is just like extra effort -- like work harder, do more, work harder. And that sometimes works. You can go over the mountain, which I sort of think of as taking more time than everybody does, and that can work with things like extended time or just doing more work. And that sometimes works. But then I say you can also go around the mountain, and that I liken to finding tricks.

Like, for instance, I live in Manhattan, and Manhattan's on a grid, and one thing about the numbering, the house numbering, is that on the side streets the odd numbers are always on the north side of the street. Now, if I go into a building and I come out, I have no idea which way I'm supposed to turn, okay? Most people just remember. But I can say, oh, if I'm on the side street, I can look at the canopy or the building number and say, oh, it's an odd number. That means I'm on the north side. That means I'm facing south. I want to go east. And then sometimes I'll turn myself around so I'm facing the building and facing north, and then I remember east is on my right. Now, that's a little bit complicated, but it's better than wandering around lost."

We are constantly learning about this disorder/disability. We are moving in the right direction (as Dan told me a hundred times today via text) even though sometimes it doesn't feel like it.

Thanks for checking in! Have a great week!

ps. Both boys have been soundly sleeping since 6:55. Total tiredness.

Friday, June 27, 2014

Out with the bad.

Elijah's body has been completely free of Clonidine for 48 hours now. Maybe it was one of those fluke days that we see on occasion, but...I noticed a definite improvement in behavior tonight. The constant defiance was gone. He didn't seem to be wanting to make me mad every single second. His tics were VERY minimal. When I asked him to stop what he was doing to come to the table, he obeyed without arguing. Bedtime was super easy. He fell asleep quickly. We are happy that the "sleep meds" are working their way out of his body! We will continue with Valium at a low dose for a few weeks. So far so good. We are seeing glimpses of "normalcy" return. Praying it continues..

My sister very graciously offered to come to our house tomorrow to watch the boys while Dan and I work. Since we both work mainly on weekends in the summer, we have been so blessed to have family who helps us out so much. We are grateful! And the boys are very excited about spending a day with Auntie Lynn and cousin Kaleigh!

I hope you all have a wonderful weekend! I'm off to charge my camera batteries and organize the rest of our bedroom (much progress was made last night...I know you've been dying to hear an update). :)

Thursday, June 26, 2014

So long, meds!

Elijah is officially done with Clonidine, and I feel VERY good about this. The sleep doctor told me today that it is "extremely unusual" that someone would have adverse sleep reactions while taking this medication. Dr. M #1 said this exact same thing to me recently. Elijah has always been super sensitive to meds. Even when he takes antibiotics for a random infection, he doesn't sleep as well and begins acting out more than usual. At the suggestion of Dr. W (sleep dr), we have been giving E a super-duper low dose of Valium at bedtime for the past three nights. We KNOW this med makes him relax, as we inadvertently learned after his ear surgery in January. Today she suggested adding an anti-anxiety med to the Valium, but...I'd like to hold off on this. I'm ok with a teeny tiny bit of Valium for now, but I have a funny feeling in my gut about adding anything else. I'd like to get past this next ear surgery and our appointment with Dr. M #1 (developmental ped) in mid-July. I'd like to get his thoughts and let the Clonidine get completely out of his system.

The sleep clinic has wristbands that can be worn through the night that monitor activity/sleep. I had them put Elijah on the waiting list, but the typical wait time is four weeks. The wristband can also act as a fitness monitor when worn during the day, so I'm trying to decide whether or not it would be worth it just to buy one! I can see Dan and myself loving something like that. Either way, it will be good to get a detailed report on Elijah's quality of sleep and to FINALLY know the truth about what time he is waking up in the mornings.

The boys and I stopped by an ice cream social on our way home from the doctor today. The proceeds went toward Give Kids the World Village, which has a special place in all of our hearts and is such an incredible organization. The people working the ice cream booth were so excited to hear that Elijah was a wish kid! The ice cream was yummy and the boys enjoyed their mid-afternoon treat.

Tomorrow the boys will be at daycare all day (please pray for Elijah and behavior!) and I get a work day at home. Dan will be working all weekend. I am shooting another wedding on Saturday and on Sunday we are hoping to spend a night at the dropzone...only the boys' and my second time there this year! We have some fun play dates planned for early in the week, with some cleaning and organizing sprinkled in between. And then on Thursday? Our wonderful friends and fellow heart family from Texas, the Coopers, will be arriving AT OUR HOUSE! I can hardly stand it! I'm so excited to love on them and show them our city/state. And to take my heart mama friend skydiving!

I'm off to organize our bedroom a bit before bed. :) Thanks for checking in!

Wednesday, June 25, 2014

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!

Monday, June 23, 2014


Elijah is struggling. We are still weaning him off his "sleep" meds and things are pretty tough right now overall. Not nearly as tough as they were a few weeks ago while we were in Kentucky, but still not cool. He wakes up in the mornings looking exhausted, he has long stretches of time when he appears to want to make everyone around him completely unhappy and potty struggles have regressed in a huge way. It's hard to see him like this, but we are thankful that this isn't happening while school is in session.

I brought Elijah to see his ENT doctor today for a pre-op check-up. He got another hearing test and his left ear showed slightly diminished hearing, but it was only conductive (middle and outer ear only, which is fine in his situation). The gal who administered the test told me it was "mind-blowing" that Elijah's inner ear was working at all, considering the damage done to it. I've never heard a medical professional use the word "mind-blowing" before today. Prayer is the answer! We'll get these doctors believing in the power of prayer after all.

I chatted with Dr. L about E's surgery which is set for July 8th. He will check for cholesteatoma regrowth. No regrowth is ideal, but if there is minimal regrowth he'll remove it and attempt to place a prosthesis. There is a 10-20% chance of regrowth, and if there is any we pray that it will be minimal. The likelihood of restoring some of his hearing is GOOD (a miracle, considering the fact that his footplate is totally broken in half). The length of the surgery will be 4+ hours. I asked about the chances of having a difficult recovery like last time and he said, "We won't know until we're there!"

I've managed to push anxiety about this surgery aside for the most part. I'm thinking the behavioral issues we've been dealing with have been a good distraction?! The other night after shooting a wedding and getting home very late and being very tired and vulnerable, I felt some anxiety start to creep in. I had the thought, "How in the world am I going to get through this surgery?!" I envisioned myself in that waiting room, again, worried and wondering what was in store. As is always the case, it seems, I heard just the things I needed to hear in church the next morning. I refuse to let fear/anxiety become my lowercase-god. There is another God who is bigger and that is who I will focus on!

Today I was an organizing fool! The boys' activity corner is completely RE-organized, including a list of activities for the boys to choose from when they are bored. I also started on the toys in the garage (my hugest task of all). It feels great! I have much more to accomplish. Dan has tomorrow off work, so we are hoping to spend some quality time together as a family. Maybe the pool? Followed by a little more....organizing?! :)

Have a great week! I hope you all are enjoying this nice warm weather!

Friday, June 20, 2014

Very random post-trip thoughts

Today was weird. I was foggy-brained, exhausted, sore and impatient. Dan worked at the dz while the boys and I wandered aimlessly around our messy home. Dan had the house totally clean when we got home last night and now? It's a disaster and I don't care. Maybe on Sunday I'll care. Tomorrow I'm shooting a wedding and Dan will be working, so the boys will be spending the day at their Auntie Christine's. Please pray for good behavior and a great day! (Gulp..a little worried.)

Some miscellaneous thoughts.. (Have you noticed I like to write in bullet points lately?)

- I have big plans to organize our home! Mainly for Elijah because from what I've read, NLD kids thrive when their surroundings are organized. In the next few days/weeks, I plan to: 1. create an "alone" space in our closet for Elijah and Sammy to retreat to when they want to be alone, 2. organize our disastrous storage closet, 3. organize our garage, 4. get rid of some toys, despite the boys' pleading not to and 5. go through the boys' clothes/closet. 

- Potty issues were very frustrating on our trip, and even at home today. Something with E is still just not clicking. During our long days of driving in the car, I may as well have had a newborn with all of the pulling over for poop clean-up that was going on. This is extremely frustrating, as it is such a regression from 8-9 months ago.

- We were able to spend time with my brother and his girlfriend while we were in North Carolina and we cherished our time with them! The boys also got to go to two days of VBS at my parents' church, which they both loved. We swam in their neighborhood pool a handful of times, and Sammy even got in the water! And he removed his shirt (major improvement from last summer)!

- I am determined to teach both boys to swim within the next year. Also on the agenda is music lessons! In the NLD book I just read, I learned that musical talent tends to come naturally for these kiddos and it is a great outlet for them. And Sammy has always been musically inclined, so...we will pursue this. Violin? Piano? Both? 

- My dad and stepmom brought us to the Lazy 5 Ranch in NC and it was such a cool place! We traveled in a large wagon amidst very large roaming animals, feeding and petting them. If I hadn't been fending off Elijah attacks, it would have been even more enjoyable. For the first 8-10 days of our trip, the meds (I believe) caused E to totally lash out at me, both verbally and physically. It was rough. And sad. But I kept reminding myself it wasn't "him," and that helped.

Here are some fun L5R pics! Thank you so much for peeking in!

Thursday, June 19, 2014

Summer road trip 2014!

Uhmm, hi! :) I've been sitting here for a while without the proper words to begin this post. I guess I'll start by saying that we're back! The little boys and I had quite the adventure. We traveled 2,800 miles, we visited 7 states and we were away for 13 days. We received MUCH love from friends and family and made many memories that we will never forget.

(Our heart friend Evan took this photo of the boys and me and it is one of the best pics EVER taken of the three of us!)

I'm not sorry that we took the trip but if I had known the extent of the struggles Elijah would have endured on this journey beforehand, I may not have left our cozy home. He struggled. He REALLY struggled. There are many moments I would rather not remember. My amazing heart mama friend Sarah and I discussed Elijah's behavior at length, and because of those conversations (and, of course, the ones over the phone with my amazing hubby...and the ones after-bedtime with my stepmom) I feel like we have deeper insight into our boy. We are still so much in the learning phases, but we know that there are a few main factors at play:

- Sleep   We are controlling sleep as much as possible right now by reverting to what we've always done and putting E to bed EARLY. Thankfully, all parties on our trip were completely understanding about this and I was able to get Elijah to sleep at an ideal bedtime every single night while we were away.

- Stupid sleep meds   Dan and I feel that the recent dosage increase of E's sleep meds have been counter-productive. We think the latest dose caught up to him while we were in Kentucky, causing him to behave in ways I've NEVER seen. I contacted his sleep doctor and she agreed that we should immediately begin weaning him off the meds. Not only was the higher dose bad for him, but the weaning process has been a big change for his body on top of it. I cannot WAIT to get these stupid meds out of his body.

- NLD   I finished my NLD book while on vacation and Dan has been reading it, too. We feel like this is such a huge part of why Elijah has so many struggles, especially while away from home and in visually "chaotic" and/or new environments. It gives us so much compassion for him and makes us realize how difficult it must be for him to exist in visually busy and also unpredictable places. There is so much to report about what we've learned about this. New environments are SO scary for Elijah, so testing the waters with Dan/me may be his way of testing his safety/security. Perhaps his acting out could BE his security because he knows what to expect from us (even though it's a negative response) in an otherwise unpredictable setting.

There will be more to come about our trip in the next few days! I have fun photos and stories to share. We had a great time overall and we are so grateful for the friends and family members who totally took care of us on our journey. We drove 12 solid hours today (730 miles) and we were EXCITED to be home at the end of the day. Hugging Daddy/Dan felt amazing!

Thanks for checking in! Here are a few pics from our journey. I'll post Lazy 5 Ranch (zoo) pics tomorrow (I have a lot to share).

Checking out some trails with heart friend Evan!

My boys love their Evan so much!


Story time with Grammie and Gramps. 

Both boys LOVED their pool time at Grammie and Gramps' house!

Thursday, June 5, 2014


Check out the incredible growth that took place this year for BOTH boys! Wow!!

Today was Elijah's last day of first grade, the grade I'd (mostly) like to erase from all of our memories. We have such a great feeling about next year, having a better handle on how E operates/thinks and also being on top of teacher selection. Although the year was rough in so many ways, I have to say that we took away some very valuable lessons:

- If his teacher isn't a good fit, PUSH FOR A CHANGE. Elijah NEEDS a good teacher fit in order to succeed in school.

- ALWAYS advocate and press on for answers (medical and otherwise) until we are satisfied and know how to best help our boys!

- Sometimes we just need to be patient. And pray. We have done A LOT of both this year. A whole lot. I am one seasoned, patient pray-er.

- Make specific requests before attending field trips with E. I wish I'd done this at the beginning of the year. Lesson(s) learned.

The rental car is in our driveway and partially packed up! I have almost everything ready to go. Side note on that...holy cow! Cars made after the mid-90's are INCREDIBLE! Dan and I couldn't fathom some of the rental car's features, including brakes that don't need to be pressed all the way to the floor in order to slow down.

I plan to get up at 6:00 and be on the road by 7:00. After a mandatory stop at Caribou (oh-my-goodness, I'm OBSESSED with their caramel iced coolers), we will head to Madison for lunch to meet the boys' Great Auntie Pam for the first time ever. Then it'll be another 6ish hours to Louisville, Kentucky, where we'll be staying for 5 nights with our awesome heart friend Evan and his incredible parents. After that, we'll head to Charlotte to spend a week with my dad, stepmom, brother and (hopefully) brother's girlfriend. We are EXCITED! Adventure awaits!

Posts may be limited for the next few weeks! I'll try to post a few updates, but we'll be busy having FUN! Have a great next couple of weeks and thank you so much for peeking in on us!

Wednesday, June 4, 2014

Our baby's 4th birthday!

I think it's safe to assume that Sammy had a great golden birthday! We began the day with Straw-Blue-Nkle-Berry Pancakes! 

Because of our (quickly) approaching road trip, I had some errands to run and work to take care of today. Dan and Sammy spent most of the day together. After his nap, the two of us sat at the kitchen table and frosted his birthday cupcakes! He requested rainbow cupcakes with green frosting and sprinkles.

As usual, we wrote out a number with the cupcakes. "Mommy! If you sit on the other side, it's a lowercase H!"

He was SO excited about the card we gave him. He loves singing cards, so this year he got a singing cupcake!

When Dan and Elijah got home from PT/OT, we sang "Happy Birthday" to Sammy and he blew out his number 4 candle for the second time in just a few days!

Then, presents!

He had gotten a bunch of bubbles from family members at his party on Sunday, but spilled ALL of them within a few hours. He was horribly upset about it. I sneaked a few bottles of bubbles into his pile and he loved them! The happy face says it all.

The ONE thing Sammy asked for this year was....a baby chick stuffed animal. ?? I'm not sure where this came from, but I found a cute one for him and he snuggled that thing like crazy! "Awww, sooo cute! He likes to snuggle me! He's SO CUTE, Mommy!"

As usual, Elijah shoots me a perfect smile with eye contact when I say, "Look here and SMILE, boys!" and Sam looks down with his silly, adorable grin. I love my boys!

Our "big" gift to Sammy was a talking Stuart Minion. Both boys were super excited about welcoming him into our family.

Tonight we did our standard Applebee's birthday dinner. Dan and I were just talking about how we're going to keep the boys believing that Applebee's is a super special place, and for as long as we possibly can! Sammy had a fun time at dinner, being sung to and being loved upon. I think he had a great golden birthday!

Our family would not be complete without our beautiful, handsome, FUNNY, silly, smart, growly-voiced, sassy Sammy! He has such a "sweet & sassy" little personality and I feel SO blessed to be his mama!

Car update: My awesome cousin Trevor worked on Big Red for most of the day and delivered her back to us with a new hood! He still has some tweaks to deal with, so we'll get those taken care of in the next day or so. And it doesn't bother me one bit that the hood of our red car is now black. It gets us where we need to go!

Tomorrow: Dan may be skydiving. I have a hundred more errands to run, things to accomplish and items to pack. Sammy will go to daycare after his well visit in the morning. Elijah has his LAST day of first grade (soooo happy to end this school year!). Side note...he has had two "great" days in a row this week! Tomorrow night I'll pick up our rental car and load up for our big trip. We depart Friday morning at 7:00a!

Thanks for checking in! I'm going to kick my heels up for a bit before bed. THANK YOU to those of you who sent Sammy something special in the mail! He LOVED being the center of attention this week and today.

Tuesday, June 3, 2014

Thinking in bullet points tonight.

- I'm feeling super thankful for the wonderful people in our lives. My cousin Trevor (our "car doctor," as the boys call him) has been such a huge help with our cars over the years. He so willingly helps us when we are in need of car help. He stopped by tonight to peek at our hood issue and he will spend a part of his day tomorrow replacing said injured hood. Then my stepmom VERY graciously offered to purchase a rental car for the boys and me so we won't have to fret about my old car crumbling on the interstate as we drive across the country. The road trip is ON and with much less stress! Thank you, wonderful people whom we love so much!

- I read an insightful chapter in my NLD book today and have contemplated it for most of the afternoon. Basically, whenever Elijah acts out, he is either overwhelmed or confused. We need to provide him with a "safe" place in our home that he can escape to when needed (especially since he does not have his own bedroom). We need to learn how to provide him with as much predictability as possible, especially when we're away from home. Over-explaining things/schedules repeatedly (something I've ALWAYS done) is very helpful for him.

- Sammy's fourth golden birthday is TOMORROW! I remember his birth so clearly. I was scared, really scared, for surgery. I remember his deep growl and I remember the doctor shouting, "HE'S SEVEN POUNDS EVEN!" I remember holding him and wondering why there weren't wires, tubes and IV poles attached to him. I remember loving him like absolute crazy and not wanting to even sleep because I adored him so much and wanted to be touching him at all times. I remember Elijah meeting him for the first time and saying, "Can I hold it?!" :)

- I love how Sammy says "pecause" instead of "because" and "long-mower" instead of "lawn mower."

- So many things have been making more sense lately as I continue to absorb new information about Elijah. I've been thinking about all those times when I became annoyed because he had to know the guy's name in the car next to us on the interstate or how many minutes/miles it would take for us to arrive at a certain destination or what time and date we would be able to see a certain person again. He was labeling everything! It wasn't OCD (like I've thought all along). He needed a verbal label and he needed it repeated in order to remember it.

- I am so excited to spend time with my wonderful heart mom friend Sarah and her two wonderful boys! Just a few more days!

- Tonight I found Sammy outside with his new squirt gun, washing my injured car's windows so thoughtfully and carefully. He even began washing the tires!

- Elijah willingly washed a few dishes on his own tonight. I have no idea what was going on there. Is there a full moon tonight?

- I hate packing. Are there Packing Assistants for hire?

- Sammy requested StraBlueNkle pancakes in the morning for breakfast. Short for: strawberry-blueberry-sprinkle pancakes. We'll make it happen for the golden birthday boy!

- I'm off to wrap Sammy's birthday gifts. Here's hoping our sweet youngest boy has a memorable golden birthday!

Monday, June 2, 2014

Zoo and MOA!

These photos are a bit out of order, so please forgive me. I went along with Elijah's class on their MN Zoo field trip today. Whew! I'm happy to be sitting on my butt right now! I had a GREAT group of four awesome kids who listened well and stuck by my side. We had a fun day, but it was a wee bit long. I had one kid (Elijah) who tired very easily and another who acquired a blister on her heel pretty quickly. Hence, two hours of piggy-back rides. After lunch, I rented a stroller and pushed the two of them around while the other two did a great job of keeping up. It worked out great! AND I got my workout in for the day!

This pic was taken at the MOA on Saturday. We went to a family birthday party and were able to ride on a few rides with my cousin Trevor and his cutie, Veda. Here's E and Veda on the ferris wheel!

This is my Sammy! Here's what I get when I ask him to pose for a picture. :)

For the first time ever, Elijah went on the "fast cars" with someone besides Dan or me. He and Veda had so much fun together! The blurred heads say it all.

So cute!

Happy cousins!

Here is a pic of the boys as we waited in the cell phone lot to pick Dan up from the airport on Saturday evening. We couldn't wait to see him!

And here is our sad car tonight. This is cosmetic and poor Big Red will not be driven with duct tape. :) Hopefully within the next few days we'll have a new hood and be ready for our road trip!

It was such a nice day here in MN today despite the forecast, so I hope you local friends were able to enjoy it!