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!

Fullness

If I had to describe our summer in one word it would be FULL. It has been totally packed full of fun adventures with one another and with family and friends. In May I never would have predicted that we could fit so much into a single summer. And honestly, much of the reason that we were able to squeeze so much in is thanks to Elijah's new medication. The dosage still is not ideal, but we are inching our way there slowly. We know that it does something very good for his brain, so we have continued to perfect the dose. Thank goodness we have had the summer to work through the bulk of it!

This has been a long time coming, but both Dan's and my cars are basically useless. Mine is currently not working at all and Dan's is limping along like a 100-year-old man. Some big developments and blessings have come our way in the past week. We have purchased a new (to us) Camry that is seriously the most beautiful thing I have ever seen. I have NEVER been more happy and grateful to drive a car in my entire life. I LOVE IT.

I love driving places and not being stared at for being so annoyingly loud. I love not having to park at the deserted end of the parking lot when I meet someone for a photo shoot. I love that the radio works and the seat moves forward and backward and that I can communicate with others in the car without yelling. Sammy's favorite feature of the car is the fold-down cup holders in the back seat. He loves them and exclaimed, "This is the best car EVER! My favorite one in the entire world!"

We have been working with my car mechanic cousin Trevor (who is sooo kind to us) to figure out which one of our pieces of junk we should salvage. In the meantime, my sister and her husband came upon an extra car unexpectedly so they offered us one of theirs. So now we have two working, non-embarrassing vehicles to drive. Yay! We are super grateful for not only our new cars, but also for the people in our lives who have helped us out so much.

All summer long I have wanted to sit down and write a post about new developments with Elijah, but things just keep developing so it never seems like the right time. I think what describes things the best is what I wrote in one of my last posts about Elijah being composed of puzzle pieces. We are learning what the main puzzle pieces are and that we need to guard those pieces with our lives and keep them firmly in place so that the smaller pieces don't fall off the table. Keeping sugar intake under control is a HUGE piece. Early, consistent bedtimes is another major piece and now so is reading his behavior carefully and changing the dosage of his medication accordingly. We have also continued with essential oils and I don't know if this is a main piece or not, but it certainly isn't hurting. Elijah does still have rough days, but the definition of "rough" has changed since last winter. Even when he is totally exhausted, he can leave a fun party without throwing a fit or use the restroom when asked (not always, but it CAN happen).

The boys have had so much fun getting to know my mom this week! She is visiting from California and we are having a great time with her. Elijah and Sammy were super excited to take her to see Inside Out (their second time seeing it, lucky boys), their most recent favorite movie obsession. They are also educating her on the topic of Captain Underpants, potty talk and brotherly "love."

It is going to be strange having both boys in school after this insanely busy summer. It's just over a week away! Thanks for peeking in and have a great rest of your weekend!

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!

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!

Berries and behavior

Soccer and swim lessons are done...hooray! It's sad, too. Sammy cried at the thought of not seeing his teammates again. He does not like change!

On a fun note, the boys and I picked berries for a Hope Kids event yesterday. It was fun and filled with flying beetles that were VERY attracted to Sammy. Despite that, we loved picking juicy strawberries. We picked three pints and they are all GONE! Yum!

I love these smiling faces!

We found a heart-shaped berry! 

I met with Elijah's Fraser social skills therapist by myself on Monday and had an unexpected reaction to our visit. I hadn't met with her sans Elijah since February. I explained to her what we experience daily... the fact that none of us really sleep past 4am and that we are often changing sheets and cleaning up accidents in the middle of the night and that we are constantly on edge and TIRED and we never know what to expect with behavior. C literally dropped her pen onto her pad of paper and said, "Megan...this is TOUGH stuff. Your lives are not the norm. PLEASE be easy on yourself."

Ugh...unexpected tears..

I know this, and I feel like I almost try to hide it from people. I never want anyone to feel like we think we are stretched more than anyone else. EVERYONE I know feels stretched beyond their means. Life is crazy for everyone! But things are tough here. C was validating.

I mentioned the medication Dr. M had prescribed and she felt like we should just try it. Why not?! My brain says, "Ha!" I have prayed so hard about this. Elijah is SO sensitive to meds and usually has such a negative reaction, but it is so enticing to try SOMETHING.

Dr. M thought we would know within two to three days if this med wasn't a good fit. This morning I handed E the capsule and prayed, "If he can't swallow it easily, it's a sign." He swallowed it easily. Overall, behavior today was slightly above average. We'll stick with the meds for a few more days before committing.

To be continued!

Super fun weekend with friends and surgery tomorrow.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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). :)