State Fair 2016, dr updates and new digs!

Elijah's tummy has not been the same since the testing we had done at Children's last week. Tummy troubles have kept him home from school Friday and today. Things were bad Friday, better Saturday and Sunday and again at 3:00 this morning he was throwing up. The doctor we saw today thought it was a virus that has worsened with sugar. Today I didn't let him have a single bit of sugar and he's been so much better. Praying for a better day and SCHOOL tomorrow!

Yesterday he seemed well enough to make our yearly State Fair trip and he did great all day (uhh...till his began digesting the greasy, sugary food). We hit all our favorite spots, plus some. Pics are below!

E had an appointment with a Genetics doctor this morning. It's one that I'd scheduled earlier in the summer at the suggestion of Dr. M, our wonderful developmental ped. We haven't seen genetics since 2009 when Elijah was two and at that point they had done extensive testing and hadn't found an underlying issue for his congenital anomalies. Dr. M thought it would be worth another visit, seven years later. Advances have been made in science and other anomalies have popped up with him since 2009. Dr. S agrees with me that there is most likely an underlying genetic reason for everything. We will do a few in-depth tests in the next couple weeks. The REALLY in-depth tests are super expensive and aren't yet covered by our insurance, but the hope is that within the next year they will be. What is the point of doing this testing, you ask? Good question! If we do find a genetic underlying cause for his congenital issues, then we would know for other things to look out for (organs to keep an eye on, for example).

One of my weaknesses happens to be falling into pits of fear and becoming totally consumed by it. There was a two-hour period of time today when I fought really hard to stay out of that pit. Elijah's vomiting has worried me and then his blood pressure at this morning's appointment was 135/90 (!!). After that he got a BAD headache that lasted nearly an hour. He gets these occasionally, but they've never been so intense or lasted so long. I wrapped my arms around my writhing boy and cried and prayed so hard for relief for him. We thought the headaches could be related to his spinal cord retethering (part of last week's testing), but those preliminary results show no retether (both good and bad news). The high blood pressure is likely because of this little tummy bug as well as some mild dehydration (conferred with Dr. G's nurse about this, just to settle my nerves).

All of these things pressed fear down hard on me today. I had a moment at Appointment #2 as I stared down at Elijah's flip-flops while he was being weighed for the second time. There was a moment of clarity when I realized: I DO NOT have to take on this worry! My job is to take care of my boy and I've definitely got that under control. There's someone else shouldering the worry and it's so easy to forget about that and become wrapped up in total fear. We go in and out of these cycles of medical worry and unexplained symptoms and in the end they stretch but also strengthen us. 

Saving the best news for last, we very quickly became home owners over the weekend! The third house we looked at was THE ONE. All four of us loved it instantly. It's spacious, sits in a quiet cul-de-sac, has a huge fenced-in yard, space for our RV, a detached building that can be used for an art/photo studio and even a POOL! We placed an offer a few hours after viewing it and a few hours after that the offer was accepted! The house is on the older side, so we are praying for a good inspection on Wednesday and then we'll be in the clear. We're super excited! We'll move in mid-October.

Thanks for peeking in!

After the 23rd surgery

Two quick funnies from Friday that I forgot to write in my last post! At one point before surgery, a nurse asked Elijah if his wristband info was accurate. She said, "Are you Elijah Daniel Porta?" He said yes and she asked, "Who are these two people with you today?" Elijah said, "That's my mom and that's the guy with the gigantic beard." :) Then after surgery the anesthesiologist came in to discuss how things went (this doctor was AMAZING, as all of them are at Children's). He said that E did great and then started laughing so sincerely. He said that Elijah was so polite as they were sedating him, saying things like, "No thank you, I really don't like that icky mask. Please take it away." That's our boy!

Elijah has bounced back from surgery like a total champ. I can hardly believe it! Literally the morning after surgery he was chipper and helpful and happy and rested. He was bouncing all through the house and eating through our fridge like caterpillars eat through milkweed. He was hardly in any pain this time, which was a huge difference from last time. This made me think about something. How often do we say a specific prayer a million times only to have it answered...and not give thanks?!

ALL of my very specific prayers were answered for this surgery. I prayed for a miraculous calm to take hold of Elijah in the OR. This was surgery #23 for him and all of the previous 22 surgeries have brought severe anxiety when the mask was put onto his face in the OR. I'm talking, multiple people having to hold him down because of body flailing and total anxiety/panic. :( According to Dan (because I have only gone in once and swore I'd never do it again), this time was a breeze compared to the last 22. That was an answer to prayer! My other main prayer this surgery was for Elijah to experience minimal pain afterward because last time was pretty bad for 2-3 days. He has had such minimal pain this time. Another answer to prayer. This time I have followed up with much thanks. It's so easy to overlook that part when your prayers have been answered, isn't it?

We are having some specific issues with behavior which pertains mostly to Elijah acting out aggressively toward Sammy. We have a plan in place for that and we're sticking with it, even if takes months for him to stop these behaviors. Consistency works best for him. Other than these issues, behavior has been overall so good for the most part. I remember just a few months ago barely making it through every day. The late afternoon hours were so rough that I wanted to run screaming from my house by 5:00pm. It's not like that anymore, even when homework and therapy is thrown in.

Elijah has been using the toilet on his own lately and I've been afraid to mention that to anyone in fear that he will regress again. I realized today that I have also been able to work on "other" things that even a few months ago wouldn't have been possible. He now gets into the car all by himself and puts on his own seatbelt. Even as recently as July, this did not happen. He also will put his shoes away when he gets home and put them on without complaint when it's time to go somewhere. Prior to July, I mostly did tasks like these for him. If I ask him to do a favor for me around the house, he'll (usually) do it happily. He now brings his plate to the counter without being asked after every meal. All of these things would have been tasks I wouldn't have even attempted three months ago, as we were all just doing our best to survive! I attribute most of this to his anxiety meds. They are another answer to prayer and I am grateful for them!

As always, I had a rough couple days after Elijah's surgery. It always hits me hard, even when it's a minor ordeal. I walked around in a stupor for most of the weekend and got nothing accomplished. Here's to a great week! Thanks for peeking in!

Second week of school...success!

The second week of school is done! Both boys have been doing great. Sammy has been dutifully picking up litter in his classroom, just as he does everywhere we go. :) Elijah has been continuing to show maturity this week, which is in my opinion in HUGE part to meds. Being used to the way things were last year, I find that I brace myself in certain situations only to find that I can relax. Example: homework! He and I have sat down three times together so far this school year and completed BIG math sheets with at most one mild complaint. Last year there would have been 50 complaints and he would have scribbled over and eventually crumpled up the paper. As was the case during the summer, his threshold seems to be so much bigger. He can handle a full day of school and therapy and homework and not be totally overwhelmed. PRAYING this continues!

I took E to see Dr. M (developmental ped) this week and he was happy to hear how Elijah was responding to the meds. He told me that just observing him in the office he seemed calmer and less distracted. We are going to try a VERY tiny dosage increase in a few weeks. We are also continuing with talk/skills therapy and Dr. M was on board with everything we are doing. We are also having someone come to our home on Monday to do an assessment for in-home skills/behavioral therapy. I'm feeling super hopeful about this because so much of what Elijah needs assistance with occurs in our home and typically in the late afternoon/evening. In addition to being his LUCKY mom, I am also his behavioral/social skills coach and it would be SO helpful to get some help with this!

And of course that's not all! :) Elijah's urethral surgery is scheduled for next Friday, but Dr. R asked that we have pre-op done a week in advance in order to get results from his urinalysis in time. Today I got a call from his primary doctor with the news that Elijah's preliminary cultures showed that he has a UTI! Today we started him on a 10-day course of antibiotics and that likely will push surgery back by a bit (we'll know for sure on Monday).

It's always something, but I want to say that the constant "action" in our lives does not bring us down. Aside from HATING the pain and anxiety Elijah has to constantly endure, we do remember that THIS IS OUR JOURNEY (not just Elijah's, but OURS..we're always right there with him). It's useless to fight what God has in store for us. If we did, we'd be miserable!

I was able to spend a bit of time in Sammy's classroom this week and it was so much fun to see him in that setting. He is thriving and growing and doing so well. I am so proud of my sweet boy! He has been a bit more tired than usual, but he has eagerly gotten onto the bus every morning and hasn't complained about a thing. He adores his sweet teacher (she is the BEST!) and talks kindly about his new friends. He literally has not said a single negative thing about school.

Today we made our yearly trip to the corn maze as a family and we had so much fun! It was our warmest year to date. I of course have tons of photos to share. Next post! Thanks for reading!

State Fair 2015 and preparing for a new school year!

Another full week has passed! It was fun having my mom here for a few days. The boys were ALL over her and I think they made her head spin a bit. :) We said goodbye on Wednesday as she hopped on a plane to go back to Palm Springs. Dan got back from a long work trip and we made it to open house to visit both boys' new classrooms. Sammy is finally excited for school. He was so cutely excited to have a locker that has his name on it and to check out his new classroom. I think he is going to have a super fun year. Elijah's teacher seems AWESOME and we feel like she will be a great fit for him. Dan and I sat down with her this week for a few minutes and gave her the insight that we thought would be helpful before jumping into the year.

Meds update: We have been going up and down and up and down with dosage because neither 10mg or 20mg has seemed right for E. This week I decided just to deconstruct the capsules and give him what would be around 15mg every morning. We had some SUPER rough days this week, but I feel in my gut like we need to stick with this dose for at least a week before making changes. Just about every 2 seconds I whisper a prayer to myself that we will find the magic dose before school begins. Please, God.

We squeezed in a trip to the Minnesota State Fair this week and we hit all of our favorite food stands and rides. As always, the day went super fast. We love our yearly family State Fair day!

Sammy posing like the "Statue of Liverty" with a cold glass of milk. :)

He was so excited to pet a cow ("Cowwy's family!").

Traditional oink booth crown photo.

Love these two oink booth cuties.

You'd never know that 2 seconds before this photo was taken Elijah was head-butting his brother. Ugh. That switch can go on and off in the blink of an eye.

Posing with their loot!

Wishing you all a fun and safe Labor Day weekend! Thanks for peeking in!

On tattoos and turning 40

A few months ago I shared with Sarah (my amazing heart mama friend who hosted us in Kentucky) that I would be turning 40 this month. She asked if I would be interested in getting a tattoo with her while we were in KY to commemorate the big birthday. Um, YES! She had an awesome idea for hers, so I began pondering what I wanted to get.

I don't think it's any secret that I spend a lot of my time and energy worrying about our oldest boy. Since Elijah has been born, I have been given a handful of promises that I need to constantly remind myself about. I KNOW that everything is going to be ok.. Elijah assured me of that the day he was born, the first time I saw him, through unspoken words. I looked at him and I knew. His dark eyes told me, "It's going to be ok, Mama!" I have also been given this promise through a few dreams which I have cherished every day since I had them. He is going to be ok. We are going to be ok.

But I am human and sometimes I get caught up in fear and consumed with worry. I shake myself and say, "The promises! Remember the promises!" It is sooo hard sometimes. I have always had the thought that I should tuck a piece of paper with a few of my favorite Bible verses in my pocket every single day. At first I thought I would get Hebrews 11:1 as a tattoo, as this is one of my go-to faith verses. Then I had an idea.

I searched through my photos and found a picture I had taken of Elijah's heart monitor minutes into his recovery after open heart surgery #2 (the big one). I traced his heartbeat from the monitor and and added a cross at the end. It's my reminder of Elijah's strength and steadfastness, combined with my faith in the promises God has given to me/us that we are going to survive this journey! I chose to put it in a place where I can see it often, and only a few weeks after having it I can say that it has already helped me. I LOVE IT.

A few people have said to me, "But what about a Sammy tattoo?!" And I reply with, "God gave me a natural Sammy tattoo!" It's true! Sammy and I have strangely similar (and very unique) birthmarks and I love this so much. Mine is on the side of my knee and Sammy's is on the side of his elbow. As a kid, I hated my birthmark, but now I LOVE it. It's another little special connection I have with my awesome Sammy Jammy. (Sammy's is on the left and mine is on the right.)

My boys have given me a three-day birthday extravaganza, involving time with the little boys, time alone, time with just Dan and time with all of my boys. Every moment has been filled with tons of love. My boys are the best! Today the four of us went to Valleyfair and had such a fun time. I have loved the past few days and even though 40 seems a little bit scary, I'm ready to tackle it. The decade of forty is going to be AWESOME.

On Straterra (month 1)

Maybe it's all of the driving I've been doing. I have had lots of time to ponder and I've pondered a lot. I'm thinking I should drive around the Cities for an hour every day just so I force myself to take a break and think! I have a handful of topics I'd like to explore through writing. Somehow writing helps me sort things out.

First topic...Straterra for anxiety for Elijah (month 1)!

Straterra is typically an ADHD med, but can also be used to treat anxiety. Since we have tried a handful of "true" anxiety meds with no success, Dr. M thought this would be a good "family" to explore. I was hesitant because of E's history with having adverse reactions to meds. June was a rough month behaviorally...really rough at times. We were kind of at the end of our ropes and felt like we were becoming stretched again (almost to the point we were at this past winter) and we were doing everything humanly possible to make Elijah happy/rested/peaceful, but to no avail. None of us were sleeping and we were all feeling anxious and impatient, so we decided to give these new meds a try.

Within 24 hours of giving Elijah Straterra we noticed a significant change for the better. His behavior was WAY improved. He was handling stress better, wasn't as agitated with little things and was obeying without a fight when we asked him to complete tasks. After almost a week on 10 mg, things weren't AS good. Still better, but not as good as those first few days. I called Dr. M and he suggested upping the dose to 20 mg. This coincided with the dawn of our road trip, which worried me, but I did it anyway. After a few days on the new dose, Elijah was seeming more agitated and he was also complaining of arm/shoulder/muscle pains. I consulted with Dr. M again and he suggested going back down to 10 mg. Sometimes it takes kids a while to adjust, he said.

We went back down to the low dosage and really, ever since he has been MOSTLY even-keeled. We have our episodes for sure (and when they happen my head usually spins), but they are SO much less extreme and they happen WAY less often. It has to be the meds.

I believe that without the meds, this road trip would not have been as happy/successful. We visited the same exact people on last year's trip and all of them told me that Elijah was much much much different this year (for the better). 

Before Straterra, one night of poor sleep put Elijah (and therefore the rest of us) out for an entire week. He does still have poor nights of sleep, and the next day is still rough behaviorally. But now, he rebounds much more quickly. The day after a poor night of sleep stinks, but the next day he is back to his happy self. Yesterday was ROUGH on our ride home because he didn't sleep well the night before. He got a decent night of sleep last night, and today was...AWESOME! Aside from potty talk, I did not have to correct a single thing ALL. DAY. LONG. That is a miracle!

He has also been much more affectionate with me since starting these meds. He wants to be physically close to me a lot...hugging, snuggling, talking about how much we love each other, etc. This is how things used to be back when he was, ohhh, three! His desire to be close to me has strengthened our bond, which has sadly negatively affected my relationship with Sammy. He sees this new change and acts out. I'm hoping he will adjust and our bond will grow again.

On good days like today, Elijah's patience with Sammy is stellar. Before meds, when Sam upset him, he would either head butt him or scream at him...or both. Today after Sam yanked a toy out of his hands I heard E patiently say, "Do you want that toy? How long will you have it?" !!!

From what I've read, Straterra (just like any med) does different things for different people. Whatever this medication does to Elijah's brain seems to be very good. Side effects are minimal at this dose. We may eventually want to increase the dosage again, but for now things are good. I am so happy I stepped out into the scary unknown and gave it a try.

To be continued! Pray with us for continued GOODness! 

I have THREE more hours in my thirties! Tomorrow is a big one. I think I'll handle it well but for three more hours I will wonder about it possibly being tough. We'll see! Thanks for peeking in!

Back from Summer 2015 road trip!

The boys and I are home! We drove 11.5 hours from Louisville today. We made two QUICK stops and we were so happy to be home. We hugged Dan a bunch and the boys ran around and released pent-up energy. We had such a memorable trip, both in Kentucky and North Carolina. I have SO MUCH to report.. about things we did and memories we made and also about things I have realized about Elijah in the past two weeks. 

In a nutshell.. We miss my dad and stepmom and the Karrs so much. We made some unforgettable memories! Elijah, Sammy and I are feeling sad tonight but also happy to be reunited with Dan and to sleep in our own beds.

The boys and Gramps dressed up as cows our first morning in Charlotte to get a free breakfast from Chick-Fil-A. Aren't they cute?!

We have been continuing on a low dose of Straterra for Elijah's anxiety and thankfully, he is still responding well. Overall, he did SO great on vacation. We had a few incidents but nothing catastrophic. While we were at my dad's, E slept in a very dark and cozy walk-in closet and I think that helped him get a few great nights of sleep in a row. Depending on how the next few nights go, I may think about putting a bed together in our closet. Anything to help!

More later! Must sleep!

Medication roller coaster and impending road trip!

The past week has been an interesting one. Elijah went from really struggling to being his super-sweet and kind little self (thank you, meds) and gradually back to struggling yesterday and today. As Dr. M suggested, we increased the dosage of meds today.  

In standard fashion, we're living on the edge here in the Porta family...testing the waters with medication before and during a big vacation. The little boys and I leave for Kentucky bright and early tomorrow morning. Sammy was especially excited today and kept asking why we can't leave for our road trip NOW?!

We decided to keep both boys up for fireworks this year. It's always a debate. Keeping Elijah up that late usually sets him back for a solid week. After only getting 5-6 hours of sleep Saturday night, he was very tired on Sunday but held himself together SO well, considering. It was kind of incredible, actually! It was fun to experience our first true 4th of July fireworks together as a family, but Elijah didn't even seem to enjoy it very much. The noise made him super anxious and he asked during the entire show when we could leave. The boys DID love the color wands that Grandma bought for them! Lucky boys.

The medication we have been giving to Elijah, for those who are curious, is Strattera (atomoxetine). Typically it is given to help with ADD/ADHD, but it can also help with anxiety. A few days into giving it to Elijah, I realized that I had not officially cleared it with Dr. G (cardiologist). He knows E's heart function better than anyone, so I always like to hear straight from him that any med is going to be ok for his heart. It took him a while to get back, so in the meantime I very stupidly googled "straterra and children with congenital heart disease." Please don't google that! UGH! I hate google sometimes and this is the reason I haven't done that since Elijah was a baby. The things I read were horrifying! We called Dr. G again to confirm whether or not we should continue this med. Everything is good. NO more googling medical concerns. EVER. Again. Find trusted doctors and TRUST THEM, people!

I don't know if today's dosage increase will be a good or bad thing, but we will find out...on the road...in the next day or so. Please pray with us that it is good! I want my boys to always feel peaceful and happy and rested.

We will be on the road for 10-11 hours tomorrow and we'll spend 4 full days with our favorite heart family who lives in Louisville. We LOVE the Karrs and look forward to spending time with them every summer. Then we'll drive onto Charlotte where we will spend a full week with my dad and stepmom. Eeeeek! Super excited! PLEASE, if it is on your heart, pray for Elijah's meds to work and for our trip to go smoothly. THANK YOU!

HOPE!

Today was another good day! For the second day in a row, the evening hours were peaceful. I have not described our evening hours as "peaceful" in a very very long time. Could it be? Could this medication be helping? We are sooo so hopeful.

I've been super aware today, mentally noting every little thing about Elijah's behavior. Maybe these are things I would have just overlooked on an ordinary day, but.. I noticed some differences today (in addition to the attitude improvement and PEACE). Despite looking tired (yawning a ton), E never looked groggy or glassy-eyed. Usually when he is tired, he also has a zoned-out look and his eyes glaze over and he shuts down.

Today he also seemed to be MUCH more aware of his surroundings. On the way to an appointment this morning, he looked out his window and said, "LOOK! There's Valleyfair over there and LOOK how green those trees are! And there's the river!" On the way back home I noticed that he was craning his neck to look through the front window of the car. I asked what he was looking at and he said, "Weird! It looks like there are puddles in the road, but then they disappear!" These are things that I don't think he would normally observe, especially when tired.

We have regressed a bit with night-time pottying but we are still getting up multiple times/night, so he is definitely tired. If behavior is as good as this when he is tired, I pray that it can only improve.

There were many times tonight when I braced myself, ready for the usual showdown. When it didn't happen, I almost didn't know what to do with myself! I'm cautiously thinking of what I might be able to do with all of this extra energy!

Hopeful hopeful hopeful!

Carefully hopeful

Today was...uhhm, AWESOME! I noticed some major positive differences in Elijah today and I can't help but think this new medication might be helping. Dan and I are feeling cautiously hopeful. PLEASE pray with us that this med will help out our precious oldest boy and his family!

I'll give an example from the day..

We were driving home from Elijah's OT visit. Elijah typically earns a small toy at the end of each session if he has a good attitude. Today he picked out a figurine from the movie Home, which both boys loved. E was playing with the toy in the car and Sammy swiped it right out of his hands. I clenched up because 99% of the time, Elijah will respond to something like this with either a raised fist, head-butting, very harsh words...or all of the above. I turned my rear-view mirror toward him immediately in anticipation and I was SHOCKED at what I saw!

Elijah calmly said, "Sammy! You took my toy! Mommy...will you please help me figure this out?!" Uhhh....WHAT?! I talked them through it and gave Elijah huge high-fives and praise. Wow! 

The entire day was filled with scenarios like this. I have been praying all day that this is not a coincidence. Please, God! Please pray with us. We are very cautiously hopeful tonight!

Spring adventures

The past week has been packed with fun and new things! Last weekend Sammy started soccer. He willingly put on his shin guards and cleats and willingly walked onto the field with a bunch of strangers (both huge feats). After they kicked balls around for a bit, we went over to meet the team he will be with for the season. He did NOT want to leave this first group of kids, and refused to say a word or even show himself to his team. His first practice is tomorrow night and I have absolutely no idea how it will go! Hopefully great! He looked sooooo cute running around on the soccer field on Saturday with his sunglasses and cute kicking.

We hit a fun park after soccer and walked around a lake. Sammy got caught up in looking for fish from the dock. We need to get these boys fishing this summer!

On Sunday we came upon a few Twins tickets, so we headed downtown for our first-ever game in the new stadium! It is NICE! The boys enjoyed...oh, the soft pretzels and mini donuts. I enjoyed the weather and scenery! It was a fun experience. Driving to the stadium as a family was surreal. For the past five years, the only time we are ever ALL driving somewhere fun on a warm, sunny day is when we are on vacation. Dan will not be skydiving full-time this year and it is strange! Wonderfully strange.

And guess who wouldn't stand by the golden glove for a photo?

Dan is in DC this week, so the boys and I are handling life ourselves. School is going well for Elijah overall. I'm SO happy that we are wrapping up the year on a mostly good note. And I cannot believe that the year is almost done. How in the world did that happen?!

It hit me last week that my days alone with Sammy are limited! This was such a sad realization for me. I cherish our alone time so much when Elijah is at school and Dan is at work. We run errands, check out new parks, have picnics, play at the mall, go to the club, hang out at home and snuggle (not all in the same day, of course). I'm going to miss this. I have been making an extra effort to enjoy every minute with my littlest cutie pie.

By the way, I've had a few people ask so I wanted to mention that we are still using essential oils on Elijah and I swear they are working. It seems like WAY too simple of a solution, hence my continued skepticism. We still have our bumps and challenging stretches for sure, but they are so much less bumpy. I think we've found a good combination that helps him sleep better, which in turn helps so much with anxiety. I have also discovered that Thieves works miracles for killing germs. We still have very specific struggles that we deal with daily at school and home, but overall life is much more peaceful than it was two months ago. We have an appointment with E's developmental ped coming up and he will also be starting cognitive behavioral therapy to work on coping skills/anxiety in June.

That's all for now! I'm hoping you are having a great week! Thanks for checking in!

Fluoxe-DONE

We got home from our yearly family waterpark adventure today. WE ARE TIRED. Despite the tiredness, we had probably the most enjoyable/fruitful time ever. This is our fifth year in a row taking this trip.

I'll report MUCH more on this in the next few days! I have photos to edit and memories to sort through..

In the meantime, Dan is cooking me a belated Valentine's dinner that smells delicious! I thought I'd write a quick update regarding medication. Per Dr. M's suggestion, we gave E a super low dose of fluoxetine for three consecutive days last week. His sleep didn't seem to be affected much, but he woke up looking EXHAUSTED. The purple eyelids and droopy/constantly-blinking eyes returned. I had a bad feeling in my gut about it just a few hours in.

Almost immediately after the first dose, I noticed that E had three new tics - super intense eye-blinking, an upward chin jerk and a head jerk to the left followed by eyes shooting straight up (I have never seen any of these tics before starting meds). As the days went on, the tics became more frequent and behavior went downhill. Dan and I quickly made the decision to stop the medication. Dr. M is out of town until Thursday of this week, so at that point we will discuss other options.

He took the smallest dose possible (0.5 mL/day) for only three days and was adversely affected. I am hesitant to try anything else! We feel like we're in a tough spot right now with his anxiety. I'm also looking into finding him an excellent cognitive behavioral therapist. We are continuing with the essential oils, although I am still skeptical. It isn't hurting, so we will press on..

I have so much to share about our fifth annual waterpark adventure! I love my three men so much! Thanks for checking in..

Stuff in the works.

The past few nights of sleep have been rough. Ohh our sweet Elijah. :( My heart literally aches for him. I cannot fathom how he must be feeling, operating on such little sleep. It is virtually impossible not to become frustrated with certain behaviors, but I do recognize that he isn't himself right now. Our sweet little boy is in there and Dan and I continue to do whatever we possibly can to get him feeling better. Here was last night's sleep record..

He was awake from 1:30-4:00am. :( Every morning when I pull up the FitBit results I cringe and wince and my heart sinks to my toes.

Homebound instruction begins on Thursday and we were super excited to learn that E's case manager from last year will be the one helping him. WE LOVE MS. W! Yay! We also received a copy of Dr. M's letter requesting the homebound instruction. To be honest, it was a bit hard to read. He listed all of Elijah's diagnoses and explained that due to everything working against each other, he has "severe anxiety" that is severely disrupting his sleep and causing school to be impossible at this point. He requested four weeks at home and for further efforts to be made to keep him at baseline once he returns. As I read through the list of diagnoses, I forgot I was reading about my boy for a minute. Sometimes it seems unfair that he has so much to contend with, but I truly believe that there is a greater purpose for it all. 

We have a lot of things in the works! This week I started bringing Elijah to Fraser (love them!) for weekly skills therapy sessions. Especially because of NLD and the way his brain works, learning skills will always be a huge part of his life. We are starting with learning skills to stop name-calling, blurt-outs and physical aggression. After that, we'll move onto lesser needs like social skills and transitions.

This coming Saturday both boys start swim lessons. Sammy is so nervous about it, but I know he'll do great! We decided to put E into private lessons, as we believe that will get him swimming more quickly. We've had him do a few group lessons in the past few years with no real progress. Elijah finds such peace when he is in the water, so my mama gut tells me to get him swimming ASAP.

I scheduled another appointment with a sleep doctor for next Tuesday. We decided to see a different doctor since Elijah has totally stumped the previous one. I'm going to insist on a sleep study to start!

And the following week we have an appointment with the wonderful Dr. M (developmental ped) to discuss anxiety. I feel like he is going to suggest meds, but I would like to explore a sleep study first.

We also have a few essential oils coming our way, which I'm super excited to try! We are willing to try ANYTHING at this point. Please pray with us that all of the above will help at least tiny little bits in order to help our oldest boy!

I'll end with a Sammy funny from tonight. I told him "good-night" and he replied, "Good-night, Jellyfish Blue. Oops! I mean, Mrs. Cheese." :)

Thanks for peeking in!

Pushing through!

This week seemed like a loooong week. We have three kinds of days lately....ok, rough and really rough. Today was rough. There was a lot of name-calling and icky words/tones. At times I have had to raise my voice because otherwise nobody would hear me! Then Elijah screams, "STOP YELLING AT ME!" Then Sammy bosses Elijah around and Elijah screams, "STOP BEING BOSSY!" Repeat repeat repeat. Yelling, name-calling, screaming, etc.. :(

I was thankful that my sister-in-law offered to have both boys over to her house for a few hours this afternoon. I drove straight back home and sat on the couch and basically did nothing for two hours. I pulled Pinterest up on the iPad and vegged on the couch. It was awesome.

Homebound schooling did not start this week (hopefully next week?), so I have been doing my own tutoring at home with Elijah. It has been a struggle getting him to sit down to do 45 minutes of school work every day, but we are making progress! I came up with a sneaky plan where I place 10 small candies in a bowl in front of him. Every time E whines/complains about doing work, I eat one of the candies. He can have whatever is left at the end of the session. To foster Sammy encouraging Elijah to do well, S gets the same number of candies that E does at the end. Neither boys got any candies for the first three days. Yesterday they got three and today they each got five. Progress!

I brought Sammy to his kindergarten screening today. Awww, my sweet little guy was so apprehensive about the whole ordeal. We were only there for 30 minutes and it was a piece of cake, but being in a school was overwhelming for him. His main issue in kindergarten is going to be separation anxiety. Everything else is great! He did super on all of the "testing" today. One of the ladies who tested him was someone from the special education program who used to come to our home every week to help Elijah when he was a baby! It was so good to see her. She had last seen Sam when he was six months old and she couldn't get over how grown up and sweet he was! She said a couple times, "I wonder if Elijah remembers me? He was such a sweet baby!"

Sammy has shown signs of anxiety lately and I hope it is just a four-year-old thing. He is worried about tornadoes, losing his parents and "bad guys" stealing him from his home. If you knew me as a child, you are now chuckling! He is definitely my sweet, sensitive, worried little boy who needs to feel safe and secure. We are doing our best! We love that boy so much!

We are heading into the weekend tired but praying for a bit of restoration for all of us. Soon, right? Soon Elijah just has to start sleeping better. Have a great weekend and thank you for peeking in!

I'll wrap up with a screenshot of one of Elijah's recent nights of sleep, as tracked by the amazing FitBit. Blue is "asleep" and red is "awake." Ugh..

Croup: Season 7, Episode 1.1 (Elijah)

Mild to moderate croup episodes do not earn their own episode numbers, but Elijah had a "dot-one" last night. It involved a barky cough and mild difficulty breathing. Compared to Sunday night it was a piece of cake. Dan and Elijah sat in a steamy bathroom and then in the cool outside air and after that things were manageable. He coughed a bit early in the morning, but all was well. He has been in bed for 2.5 hours tonight and we just heard a bit of a barky cough. It may be another night of mild croup, but we're praying for none of it!

The past two days have brought sleeplessness, anxiety and frustration as I continue to ponder and worry about Elijah being totally overwhelmed by full days at school. The scripted lines that have been delivered to me over and over make me want to scream at the top of my lungs. We continue to try connecting educators with doctors in an attempt to make things easier. As far as I know, this hasn't happened yet.

Dan accompanied Elijah on a field trip today. E seemed to have reached his limit by noon, so Dan brought him home (he thought ahead and had driven himself...SUCH a good daddy!). We are going to try sending Elijah to school the rest of this week and one day next week. Monday he has a cardiology appointment that will take most of the morning and Wed-Fri is MEA. This is perfect. We are hoping to finally get him back to baseline. After that, well....to be continued! I have a few ideas which depend on a few different factors. My top priority with this situation: making things less overwhelming for Elijah-->shortening his days at school-->doing whatever it takes to make that happen. If it can't happen, we will take him out of school SOON and figure something else out. We...HE...cannot go on like this.

It's a busy week! I'm in Cannon Falls working all week and Dan is working two new jobs (that makes FIVE jobs total for him). Despite the craziness, I feel like we have good perspective and we are so grateful for everything, including these new struggles. We know everything will come together and that good things will come of all of this.

Thanks so much for peeking in. I hope you all have a great rest of your week!

Refined thoughts

At some point when Elijah was in my belly or shortly after he entered this crazy world (probably due to his heart condition), a lack of proper bloodflow and/or oxygenation caused the pathways in the right side of his brain to become injured. Because the brain is an amazing organ and because our bodies have an incredible way of finding other avenues to make things happen when circumstances aren't ideal, alternate routes were created in his brain. Imagine a detour. You follow those annoying orange construction signs around twisty roads that are way out of your way. The process requires extra patience, energy and time. When you are back on path, you are flustered, tired and you want to scream at everyone around you.

Instinctively we have always known that Elijah does not process the world like the rest of us do. We have always put him to bed early, knowing his brain has needed extra rest. We have always tried to minimize overly-stimulating situations whenever possible because his eyes begin to glaze over and he appears totally exhausted. When we received his Nonverbal Learning Disorder diagnosis, all of the above was confirmed. We know that Elijah reaches his "limit" MUCH sooner than the rest of us do.

You know that point you get to occasionally when you have pushed yourself too far? You start bumping into walls, you want to yell at the people you love and you cry about the littlest thing? That is your LIMIT. Once you get there, you know you've pushed yourself beyond your means. You need to back down and get some sleep. Not work as hard. Relax for a few days. Take it easy. But for most of us, it takes MONTHS of pushing our limits to get to this point. For Elijah, it takes way less than that.

Elijah has reached his limit this school year already and we are becoming concerned. Full days are too much for his brain to handle at this point in his little life. In the past week he has been throwing objects in class, yelling at his teacher and being inappropriate with his peers. He has reached his limit and he is doing those things all of us do when we have reached our boiling point.

In the past year we have tried to address many different issues, assuming they were main contributing factors to Elijah's struggles. We have focused on sleep and anxiety mainly, assuming one of those might be the main contributor. After many doctor's visits and way too many tears, we now know that over-stimulation is the culprit of Elijah's struggles. When too much is expected of him and he has to process large amounts of information for extended periods of time, he reaches his boiling point. At that point he can no longer control emotions or his behavior and he wants to make everyone around him mad. I don't blame him. I know that feeling and it's awful!

Dan and I met with the key members of Elijah's school team this afternoon. They are AWESOME. They love and care about him and they genuinely want him to succeed. We suggested that we cut Elijah's school days back a couple days/week, but they offered other solutions. We expected this. They are willing to make adjustments in Elijah's schedule to help him get through the school day in hopes that he will not become completely overwhelmed.

For a four-week trial period, Elijah will receive multiple "breaks" throughout every day. He can go to a safe place and have free time. There will be no expectations. He can rest, have a snack, read or play. Dan and I are willing to try this, but we know that ultimately Elijah is going to need to spend less time at school. We'll jump through the hoops in order to keep him in school, but we know what is best for our boy. We will see how the next few weeks go! Maybe another miracle will happen?!

THANK YOU for peeking in!

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!

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!

Mind-blowing

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!

Hand it over

The boys and I made it to the dropzone last night for our first time this season. They were SO EXCITED about going and had a blast! The fresh, open air, the attention (they are always given MUCH love by our amazing skydiving pals), the playground, our trailer that is totally stocked with toys.. The dz is such a novel place for them and they adore their time there...every time.

I told Elijah last year that he probably wouldn't fit into our toy car this year. Well, he squished himself in! He made it work. We're looking into turning it into a convertible. He loves "driving" this car around the perimeter of the hangar....over and over and over, and usually with Sammy sitting in the "trunk." Sammy is closing the door of our trailer in the below pic. The boys call this our "second home." I can only imagine what Elijah's teachers and friends at school must think when he tells him about our second home having wheels, in a trailer park. :) 

Being so close in proximity to the boys' beds last night, I was able to accurately determine what time Elijah was awake for the day. That would be 3:10am! I have a feeling this has been going on for a few weeks. I'll put a call into his development ped tomorrow. We are not entirely certain that the sleep meds are helping any longer, so I would like to discuss other options.  He was a very very tired boy all day today.

I packed the boys into the car fairly early this morning and headed to church, unshowered and all. I refuse to let our church attendance fall to the wayside this summer, despite our dropzone-ing, fun and busy-ness. I was glad I made the effort because our amazing Pastor Londa put a message into my head that I absolutely needed today. The stress, worry and fear I've been feeling lately NEEDS TO GO. It's not mine to hold, and I need to hand it all over. I've felt much better today. 

Yesterday was a different story. I sat on the hard cement at a playground for over an hour, watching the boys run around while my wonderful mother-in-law's arm was wrapped around me. I had a near panic attack as I walked out of the gym with each of the boys' hands in mine. It hit me hard and very suddenly. I hadn't had that feeling in YEARS. Dan's incredible mother came to my rescue and helped talk me through my feelings. I felt much better after a dose of her love. The next few weeks are filled with...so much! Work, work, work, work, time spent apart from each other...and my mind has a difficult time thinking about anything else. But I just have to GIVE IT TO HIM!

On a much lighter note, the weather was beautiful today! Aahhhh.. finally! And I'm not sure I've mentioned it here yet, but the little boys and I will be departing on a 2-week road trip on June 6th, the day after Elijah's last day of first grade. We will spend five nights in Louisville with our incredible heart friend Evan and his family. Then we will head to Charlotte for another week where we will spend time with my dad and stepmom. We are EXCITED! My cousin Trevor (the Car Doctor, as E and S call him) just did some work on my old but trusty car and will do a final peek before we leave. We feel ready!

This coming week is going to be so absolutely and totally nuts, but...I'm handing everything to Jesus! He can take it all on and lead me. I'm taking it day by day...hour by hour. Look for the blessings!

Thanks for peeking in! xo