The End of an Era!

Today marks the end of an era! The boys walked out of their amazing school for the last time. Elijah has attended this school for five years and Sammy for two. The teachers and staff at this school have POURED love, energy, time, encouragement and teaching into our boys. The Porta boys are well-known at school and leaving all of those wonderful people has made for an emotional day. Sammy and I are having the hardest time of all, no surprise there. Tonight at bedtime Sammy cried sweet little tears. He's going to miss his classmates, especially since they have all been together for two consecutive years. It's a good lesson to learn, but it kills me to see him so sad. Elijah on the other hand is much more excited about new adventures and seems much less sad.

Mother's Day was amazing this year! My boys spoiled me rotten. Dan's and my 11th anniversary was the day before, so we got out for dinner to celebrate. It's been a month filled with tons of good, fun things, including field trips and track and field days and time in our backyard.

Earlier this week Elijah had a check-up with ENT. The hearing in his left ear is declining in higher decibels. My heart sank when I saw the change from the last test six months ago, but Dr. L assured me that there's nothing to worry about yet. He peeked in his ear and saw that the prosthesis is rubbing up against the eardrum a bit, probably causing the decline in hearing. We'll have him checked again in six months and go from there! My mind has wandered to sad places this week, but I keep reminding myself that Elijah's amazing story isn't going to change the more I worry. His story is his story and it will play out JUST as the script is written.

About a week ago we ended a week-long streak of verrrrrry challenging behavior with E. I saw things that I hadn't seen in years. He has been affected by seasonal allergies off and on again this spring and at its worst, it has severely affected sleep. And we all know what happens when his sleep is affected. Thankfully things seem to be getting better and behavior has normalized. Aside from his CONSTANT fighting with his brother, that is.

We have a TON of exciting summer plans to look forward to! Dan is guiding a DC tour this weekend and on Monday the boys and I will fly out to meet him. We will explore DC as a family for a few days and then we (minus Dan) will head to North Carolina to visit my dad and stepmom for a few days. So many more fun things are in store and we can't wait for the summer to unfold and for the end-of-era sadness to fade.

Thanks for checking in! Have a great holiday weekend!

Croup: Season 9, Episode 2 (Elijah) and behavior/school updates

Apparently we are finding plenty to do because time is passing way too quickly. Life is full right now! We are managing everything ok, but Dan and I are starting to show signs of being over-extended and exhausted. I cannot imagine what it will feel like to be fully unpacked and settled in our house. We still have so much to do. And we're hosting Thanksgiving. And and and...it's always a million things. Last weekend we pulled out our RV to give it a final clean-out before storing it for the winter and it was bittersweet! That was our home for four months. We made incredible memories in it. Life was SIMPLE while we lived in it. It made me both happy and sad to pull everything out. We will say our official winter-goodbye this coming weekend.

Two nights ago I recognized a few signs that Elijah might get a croup episode. I said, "Croup alert tonight!" and sure enough, a couple hours later we heard the stridor. It was a mild case, but of course it's never fun. We gave him a tiny dose of oral steroids and Dan sat outside with him for a bit. After that he was just fine, minus a few sniffles and sneezes that he's had since.

We had Elijah's fall school conference today and it was great! He has the BEST fit for teachers this year. They take the "rough" times in stride and certainly know how to bring out the best in him. So far this year, Elijah has shown interests in a few new things! He loves science and music. He just got a new recorder and he has been practicing it faithfully and learning how to read music. We've had a few people tell us that he has begun opening up a lot at church (the boys go to a separate area from us) and he's even been dancing to worship music comfortably in front of everyone. I love it! I have always had a feeling that music would be the bridge that connected him to church and Jesus. His teacher told us tonight that he has made some meaningful friendships in class this year (all girls, of course). There are a handful of girls who help to keep him on track (LOVE this) and really look out for him and care about him. He is keeping up with school work just fine and knows way more than he believes he does.

As far as behavior is concerned, his teachers explained his school behaviors to us and they basically mimic his home behaviors. This is good because he's being consistent! He has good days and he has tough days. I can tell within two minutes of spending time with him in the morning which kind of day it's going to be. Good days are really good. He doesn't defy authority, he completes tasks without complaining and he is generally good-natured and kind to everyone. Most days are good days. Lately I'd say we get at least four of them/week. The tough days can be really tough. There is a lot of talking back and refusals to do anything that's asked of him. He seems to want to anger and provoke everyone around him. I'm sure the tougher days are related to not sleeping as well through the night, but we aren't sure what causes that. We got new comfy (BIG!) beds for both him and Sammy and have made their rooms safe, comfortable, dark and peaceful places. I know that sometimes anxiety intrudes his mind and it's so hard to stop once it starts. We just continue to give him consistent love and care and pray that over time the good days will happen even more frequently!

A Sammy Prank :)

Sammy is loving first grade. His classmates and teacher could not be a more perfect fit for him. He is SO. Smart. He puts together and solves math problems that I'm pretty sure 5th graders can't do. His handwriting is perfect, he aces all of his spelling tests and he never has to be told to do his homework. He is such a sweet, kind little soul. He always has been, but it's been fun to see that sweetness in him even when kids around him start talking about more mature things. Despite his sweet spirit, he has not lost his strong will. He can so easily get mad at any one of us for something as simple as being corrected when using bad manners. He gets SO MAD and can say hurtful things and even threaten to run away from home. His latest tactic is running out to my car when he's upset and sitting in it until he cools off. Smart! He always comes back in with apologies and love.

It's a busy season for us, but a fun one, too! There are so many good things coming together for our family. I have to learn to bite off just a little bit at a time and not expect everything to come together overnight! Thanks for peeking in.

All moved in!

I love this pic of Buddy and his half-brother Max playing. They are so funny when they play. :)

We are in our new house! It's been a bit of a crazy week, but we are LOVING our new abode. Going from four months of RV living to being in this incredible house is something I can't even explain in words. We all have been feeling like it's not real. Elijah keeps asking if he's in a dream. Sammy told me that he feels like we're visiting friends. We have spent the past two days getting our things out of storage and unpacking. We have sooooo much left to do, but it's more than livable and we're loving it. None of us want to leave and when we have to go somewhere we get sad!

Quick update on last week's urology visit.. The dilation Elijah had done in June has done the trick so far! This is great news and something we didn't expect. We have had to cath Elijah daily (just takes a few minutes) and will continue to do that for forever if it means we can avoid another surgery.

Although this is a super exciting time for our family, it IS a big change. Elijah particularly is having a rough time adjusting to being in a different place and sleeping in a new room ALONE for the first time since he was three years old. Behavior has been really really challenging, but things will settle down once we adjust.

Elijah has a hearing check-up tomorrow with ENT and both boys have Wednesday through Friday off school. Yay for more home time! If you want to see us in the next few months, you'd best come visit because prying us away will be tough. :)

Commotion squared

I'm wondering if I have ever written a post declaring boredom? Oh my goodness, things have seemed particularly crazy for the past few weeks. The boys are both doing swim lessons again, Elijah's behavioral aide has been coming over twice/week, I suddenly have a ton of projects to complete for my food blog (yay!), work for Dan is crazy (literally), Buddy is driving me crazy most of the time and Sammy started soccer! Look at him go! He has improved by leaps and bounds from last year. He had his first practice last night and I couldn't believe how well he was dribbling the ball and how focused he was. Go Sammy!

We have had a couple really rough past couple nights. We went down a bit on the dosage with Elijah's meds a month or two ago and now I'm wondering if we should go back up. We'd need to battle with insurance again, as our dosage request was denied last time. I've been seeing behaviors that I haven't seen in a really long time...LOTS of whining and deliberately trying to make me angry. Tonight's battle began when he whined about not being able to spell the word "mother." Knowing that he knew this, I asked him to politely ask for help and that I'd be happy to help out. Twenty minutes of screaming followed, which abruptly came to an end when his flailing arms knocked a huge jar of salsa off the counter and onto the floor...ugh.

Not only is Sammy doing great with soccer, he is rocking swimming, as well! He has been so brave and I'm super proud of him. He still doesn't like water in his face, but willingly bobs his head when asked and attempts everything else the instructor asks of him.

Last week was cold and rainy, but this week has been lovely again. The boys always know exactly what the expected high is for each day of the week. They are both excited for Friday, as it is expected to be 86 degrees! Both of them have their outfits picked out for that day. We love summer!

Ohh Buddy. He is so cute and sweet as long as I have time to manage our time together well and outsmart him a bit. Yesterday was an off day and we ended up getting very frustrated with each other. Every time I asked him to come or stay or do anything he would do the opposite. I brought him to doggy daycare for a few hours to wear him out and the car ride there (which is like 5 minutes long) was a nightmare. He found things in my car that I never knew existed. An old lollipop stick that he just about choked on. A wrapper buried way under my seat. A plastic bag crammed into the bottom side of the passenger door. As I was frantically pulling him out of the car to go into daycare, I saw a piece of chewed gum stuck to his ear. I couldn't help but take a photo. Only Buddy! :)

He was exhausted after playing and this sweetness ALMOST made up for the morning (not really).

I really do love Buddy. This puppy stage is tough, but I've been thinking about all of the positive things he has brought to our lives:

- I get outside MUCH more than I ever did before.

- The soccer skills I learned as a child are being honed (and are dang awesome, I must say!) since kicking a ball around is my main way to get Buddy exercise.

- People in our neighborhood who we've never spoken to before are suddenly our friends. It is amazing how drawn to dogs people are. We have been forced into a more social lifestyle!

- My laundry is ALWAYS immediately put away because if it's not, it will get chewed to pieces.

- My floors are ALWAYS free of clutter because anything on them will get chewed to pieces.

- Every door in my house is ALWAYS closed (so Buddy isn't tempted to go in and chew everything to pieces), which makes our house look cleaner.

- Aside from the shards of glass from the salsa jar remnants that I cleaned up tonight, I have not swept my kitchen since Buddy's arrival in our home.

- Both Elijah and Sammy find him very calming, which is such a HUGE bonus. They both love lying next to him and snuggling. They love getting kisses and they love when he chases them happily when they get off the bus.


I am very much looking forward forward to a relatively peaceful upcoming weekend. I'm hoping for peace for all of you and thank you for reading!

Croup: Season 8, Episode 2 (Elijah)...and frogs and crickets.

Based on lots of sneezing and a certain little something I could hear in Elijah's breathing yesterday, I knew there was a chance that croup would happen last night. At 11:00, he woke up with mild (thank goodness) stridor. We gave him a dose of oral steroids and I sat with him in a steamy bathroom until he complained that the room was too hot. I brought him to bed with me for a bit just so I could hear if it was going to get worse. Sometimes it does, but usually the steroids help. After listening to him snore for an hour, I brought him back to his bed. This morning he had a bit of a cough, but was doing much better and seemed to sleep great for the rest of the night.

Speaking of sleep, we may have discovered something that helps Elijah sleep better. His in-home behavioral therapist was here earlier in the week when E was having a really rough time. There was a lot of screaming and refusing to do anything that was asked of him. So she got out her phone and turned on a noise app. She told him he could listen to any sound on the app and he chose....FROGS AND CRICKETS. Uhhh, ok. He immediately calmed down! So that night he asked if he could turn the noise machine in his room to FROGS AND CRICKETS as opposed to the white noise we always use. We were hesitant because who the heck wants to have frogs croaking in their ear while they sleep? We let him do it and he slept till nearly 6:00am! This. Never. Happens. We have turned on FROGS AND CRICKETS every night since and he has slept until at least 5:30, sometimes even a little past 6:00. This morning I said to Dan, "Seriously? FROGS? And CRICKETS? That's all he needed?"

The frogs and crickets have NOT helped with behavior this week. Oye. It was a DOOZY week. My energy and patience were depleted and I remembered just how challenging things could be when the wind blows violently and directly against me. We did a med increase at the end of December, but I'm wondering if we need to do another. We have an appointment to see Dr. M on Monday, so we'll see what he says and go from there. Even with the tough week we had, I don't and NEVER will blame Elijah for it. He is not the difficult one. Those detoured pathways in his brain are to blame. They make him overwhelmed and things get scary for him when that happens. It's not his fault. If anything, even through the very frustrating moments, I feel so terribly for him because I know he doesn't feel good. I have experienced anxiety in its truest meaning and it is a HORRIBLE feeling. The worst feeling. I am not always able to do this because I sometimes am too worked up and upset, but sometimes I'm able to pull out a miraculous bit of patience in the midst of a storm and.....HUG ELIJAH. It is counter-intuitive on so many levels, but it helps.

Amidst the stormy seas of NLD, we have done a few fun things in the past week! Dan and I had a night away from home without the boys. It was sooo nice and relaxing and left me wanting more! This year we will celebrate our 10-year anniversary, so we are determined to celebrate all year long! We feel super grateful that we have not only survived these 10 years, but THRIVED! That's something to celebrate.

I can't remember if I mentioned the field trip I went on with Sammy's class last week. We had so much fun snowshoeing with his class! He has the best little group of friends. They are all so sweet and kind and respectful. Which brings me to Sammy, my sweet boy. He has gotten a few extra reminders to have good behavior this week at school, which is unlike him. His teacher isn't concerned, but since it's not typical for him she thought it was worth mentioning. I asked what sorts of things he had been doing. Are you ready for this? While standing in the lunch line, he bent over and made his butt cheeks "talk" to his friends. Yep! He was SO UPSET when we gently tried to talk to him about the reminders he needed. He was so worried that his teacher was mad and that we were mad. I assured him we definitely were not upset, but that we at least needed to discuss it. He covered his ears and buried his face in the couch because he couldn't handle the thought of being in trouble at school. Yesterday he didn't need any reminders, so the gentle talk must have worked! The butt cheeks have been silenced. :)

The boys don't have school today, so they are at daycare for the first time since summer so I can work. They were so excited to see their daycare friends! Dan will be out of town tonight, so it's just the boys and me for pizza movie night. Tomorrow Elijah has snowboarding and Sammy will get to watch him for the first time. I'm still trying to figure out a way to get Sam on the slopes without a meltdown. Ice skating and sledding will be good first steps and I'm hoping to make those happen in the next few weeks.

Have a great weekend! Sorry for the ranting post. That's what happens when I only post once/week!

Croup: Season 6, Episode 1 (Samson)

You can't make this stuff up, people. Sammy came into our room verrrry early this morning barking like a wounded seal. At first I thought it was a part of my dream and I couldn't make out what the sound was. Usually Elijah's stridor comes with frantic screaming, so it was unique hearing a calm but stressed breathing. Dan sat in a steamy bathroom with him for 20 minutes and it got a little bit better. He came to bed with us (post-croup protocol) and we did NOT sleep for the remainder of the night. But at least I could monitor his breathing. I stayed home with him again today because the stridor just did not leave and he looked pale and tired. We gave him oral steroids before bed tonight and we are praying for a peaceful night!

He made himself a little fort today and tucked himself into it, feet sticking out. He said in his deep growly voice, "I'm resting, Mom.....I could stay in here for HOURS." :)

We watched a bit of tv today, but did a ton of art projects, as well. This boy is an artist! He loves painting and drawing and coloring and even creating his own fonts ("fancy letters"). He is so creative and takes pride in his work. I love it!

A few funny things he said to me very early this morning..

Before he got sick, he ran out of his bedroom a few times and into ours. When I told him to go back to bed he said, "Yeah...I do keep running back to my bed. You know why?" "Why, Sam." "Because it's UN-COZY out here."

After the croup-shower treatment, he laid in bed with me and tried to talk except his voice was super scratchy. He said, "Oh no! My body isn't letting my voice work!" .....long pause and some thinking.... "MOM! What if I don't know the sign language for a word and also can't SAY the word to you?! What will I do!?!?"

A silver lining from staying home with Sammy today was that I had time to organize and clean! I dominated our kitchen! :) I reorganized a handful of our dreadful cupboards and threw tons of unnecessary stuff away. (If you're wondering if this photo is a before or after shot, it's AFTER!)

I also made a delicious soup in the crockpot, washed and put away every dish and article of clothing in our home, cleaned out our fridge and wrote up a detailed dinner menu for the following week. I also wrote a list on our white board of every item of food in our freezer and fridge and which ones should be used sooner rather than later. A day of progress!

NOT along those same lines, Elijah has had a really tough past couple of days both at home and at school. We are seeing glimpses of last year and while it is frustrating and difficult, we understand it now. Daylight savings is always KILLER for him (so much worse for the early early birds) and we also gave him a few doses of steroids during and after croup this week (which always makes him extra edgy). Tonight was rough and I remembered just how difficult EVERYTHING can be when a single force is working completely against me. Literally the second he stepped off the bus today, the aura of the day totally changed. We are praying for a restful night of sleep tonight and for things to fall back into a more peaceful place.

Thanks for peeking in! Pray with us for PORTA PEACE! :) And peace for all of you, of course, as well!

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!

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!

Butterflies, sickness, camp, cousins, vacation and water...phew!

Since my last post, we have been busy! We have raised a few caterpillars who have transformed into beautiful butterflies. In this photo Elijah is holding Mr. Juicy! We set him free yesterday. I sat next to him until his wings were ready to fly. Watching the entire process from egg to caterpillar to chrysalis to butterfly is incredible. It's a miracle!

I think Mr. Juicy flew back to our house for a visit today! I never see monarch butterflies in our yard, but one sat right on one of our bushes for a while this morning. 

We spent a few days last week in Iowa for our annual family reunion. The boys had more fun than ever this year, playing with their second cousins and splashing in the lake.

They got tons of snuggles.

We enjoyed a campfire by the lake one evening. This is the FIRST time Elijah has ever been able to participate in anything past 7:00pm (thank you, Straterra, for helping to expand his threshold!). We are still having some issues with behavior, but overall things are better. We are seeing fewer incidents and they are overall less dramatic. We do still have rough days and moments, but we are finding that he can bounce back from poor sleep or overstimulation MUCH more quickly than before. We are praying this trend continues.

The boys got a couple boat rides, which is always a treat!

They had so much fun in the lake this year! If we would have let him, Elijah literally would have spent every waking moment swimming. Being in the water is calming for him. It is definitely his happy place!

Silly green faces with cousin Cate!

We spent tons of time sitting on the dock and gazing out over the beautiful lake.

The boys got a to have a fun popcorn-movie night with their awesome second cousins (seriously, this bunch of kiddos is incredible...love them all!).

Literally two minutes after we got home from our Iowa adventure, Sammy dropped onto the couch. He spent the following 48 hours with a fever and a sore throat. He felt crummy. It was sad seeing him out of sorts, but it made for a good photo op! Sleeping on Gramps' lap during story time.. :)

The day after Sammy healed up, Elijah got the virus! :( Sammy thankfully was feeling good enough to go with my dad and stepmom up to northern Minnesota to spend some time with family. Elijah stayed back because this is heart camp week. We have been bummed that he's had to miss a few days of camp due to his fever, but he is looking forward to going tomorrow for the last day. Tonight we will be prepping for joke-telling at the talent show!

Here is a cute video of Sammy running to Elijah Monday when we picked him up from camp. He has done this SAME exact thing every year. It's so precious. "BUUUDDDDDDDYYYYY!"

With Sammy up north, the boys have been missing each other like crazy this week. I've had to limit Elijah's phone calls to 1/day. He tells me how much he misses Sammy about 100 times an hour. Their phone conversations are ridiculously adorable. The first time they spoke Elijah excitedly said, "SAMMY?! Is it really YOU???" :)

Thanks for peeking in!

Whiplash

Things have been so up and down with Elijah's behavior lately that I constantly feel like my head is spinning. I keep thinking of a line from Twilight (ha!) when Bella tells her moody vampire boyfriend, "Your mood swings are giving me whiplash!" We have more good times than bad, which I'm so thankful for, but the bad times are tough. I still believe that the Straterra is helping on some level, but we can't seem to figure out the right dosage. Or something. Maybe it did work and is slowly starting not to. Who knows.

With third grade quickly approaching, panic is settling in. We aren't sure about whether to start out the year with half or full days and I don't have any idea who his teacher is going to be. I don't know whether I should throw tons of information at his new teacher once we know his/her name or if we should sit back and let the year unfold.

I sat down with someone from our county today who did an assessment of our situation. Based on everything I told her, she thinks Elijah might be able to qualify for some helpful services but we won't find out for sure for a few weeks. I have been more candid recently with medical and mental health professionals about how drained we all are, how bad BAD is and how I have to completely stretch myself to near breaking point in order to accomplish "other" things (work, cooking, cleaning, etc). We thankfully have good stretches, but when we hit a rough patch I seem to forget all about those times. The bad times overshadow everything. The assessor got to see quite the "activity" this morning, complete with hitting, punching, name-calling, head-butting, screaming and endless complaining. Ugh.

We have done so much to help our oldest boy, but I feel like there's more we could do. I'm ready to do whatever else we need to do, even if it means missing out on some work or not cleaning my home. Like the assessor today said, we HAVE to help him to be more consistently functional now because as he gets older things are only going to get more complicated.

Sammy and I are waiting for Elijah now while he is in OT/PT. It is during his appointments that I get things done, so I'm off to do a bit of work! 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!

Pulmonology and dev-ped check-ups

Yesterday Elijah had a check-up with his pulmonologist, who he still sees because of croup. We have always loved Dr. K. He is one of the best doctors we have ever gotten to know. I am constantly amazed at and so thankful for our incredible doctors. As always, Dr. K blew my socks off. He is incredibly smart, relatable and kind. He always makes us as parents feel valued, validated and respected. As I talked about E's croup in the past year, he kept saying, "Very interesting." When I finished talking, he explained what he found so interesting. First of all, it is "highly unusual" for an 8-year-old to get recurrent croup (of course!). He was intrigued that Sammy also gets it regularly and severely. Also, according to him, most parents never know when croup is coming and they live in constant fear. I almost always know when it's coming, and I give the boys oral steroids to prevent or lessen an episode. Dr. K was in agreement that giving meds preventatively is absolutely the right thing to do. As for E's croup, although he is perplexed, he feels we are doing everything we can at this point.

He asked about summer plans and I shared that the little boys and I will be road-tripping out east again this year. He thought that was just the coolest thing ever and promised that he would send me a few children's books on CD that his children once enjoyed. What doctor does that? He is the best!

I have to share another little tidbit about our visit.. I brought both boys to the appointment and as expected, they started to fight. Elijah tried to head butt Sammy and a few unsavory words came out of his mouth. Then Sammy was saying, "Mommy-Mommy-Mommy" repeatedly as I tried to talk to the doctor. Dr. K looked straight at Sammy and firmly said, "Excuse me!" then at Elijah and said, "Elijah, you need to chill a little bit, okay?" Both boys quieted. At first I was embarrassed and thought he must think I'm a horrible mother. After the appointment I realized he was trying to help me. He has children. He knows children. He saw me stressing while trying to focus, and he helped me out.

Today we visited with Dr. M, E's developmental ped...another top-notch doctor! Seriously, I cannot say enough good things about his team. Dr. M took tons of time with us. Learning from yesterday, I brought Sammy to daycare so I could FOCUS. Elijah did great! We did not have even a single issue during the entire appointment, which is a pretty rare thing these days. We discussed the past few months...how school ended on a mostly good note and how summer is beginning on a mostly sour note. He suggested another med to "take the edge off," but of course I'm hesitant to try it. Elijah is so sensitive to meds, but the prospect of that "edge" being rounded out a little bit is so enticing. Dan and I have some talking to do.

Dr. M is so good at building Elijah (and me!) up and making him feel proud of himself. He uncovered all of E's accomplishments in the past few months and made sure to give him huge props for everything. This is something I feel like I don't do enough. :( It is so easy to get caught up in the challenging times when we are in the trenches. Dr. M gave me a renewed perspective and I promised myself that I will DAILY tell Elijah how proud I am of him (Sammy, too). I am SO proud of my boys. Despite E's challenges, he is doing so incredibly well...and thriving! It is easy to forget about the hurdles he's jumped over to get to the point he is at now!

As I have been saying, the past few weeks have been challenging. I have been praying so hard for a breakthrough in ANY area. Last night at 3am, Elijah called me into his room, which is not unusual. What IS unusual is that he told me he had to go poop. So he did....IN THE TOILET. This is the first time he has ever done this in the middle of the night. He stayed clean for the entire rest of the night. Maybe our new "system" of taking toys away has been working?! We did a lot of talking about it today and I'm praying last night was a huge step in the right direction. I shared this accomplishment with Dr. M today and he was OVER THE MOON and hopeful about it.

I feel like we are doing EVERYTHING possible to help Elijah feel happier and more peaceful/rested. Please pray with us that we continue to make all of the right decisions!

That's all I have for tonight! Have a great evening!

Desperate times...

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

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

Birthday bro hugs. :)

The cow piñata got a beating.

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

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

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

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

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

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

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

Desperately seeking sanity

Today will never be forgotten in this mama's mind. It was one of my most challenging days being a mother. Elijah's behavior has escalated to a degree that I never imagined it could. I don't know how many more days like today I can stomach! Please pray for my sanity and for Elijah to feel peaceful! 

We have stayed very busy and that likely has been a contributing factor to the madness. On Friday the little boys and I were able to go to the zoo for a few hours, courtesy Hope Kids. We had fun!  We scurried around and saw as many animals as we could before bedtime crept up on us. Here are the boys in the "stinky jungle." :)

Dan made it home safely from DC on Tuesday night. The following pics are moments the boys asked me to capture and send to him while he was away. 

Elijah re-started OT/PT this week! We decided to take a break back in February when life was really overwhelming, so we will see how it goes starting back up. Both his OT and PT did testing on Wednesday to see how much service he will be able to receive. His PT called me back at the end of the session to show me Elijah's new accomplishment! He never would have done this a few months ago!

The boys and I have been loving on a few plants this spring. It has been fun watching them grow. Elijah and Sammy get so excited to water their flowers and veggies!

We made it to the pool for the first time early this week. Elijah is so much more capable in shallow water. I worry much less than I did last year about him wading around. He starts another round of swim lessons next week, so things will only improve!

And guess what?! Sammy did not even hesitate to remove his shirt and socks. WOW! He got into the pool right away. WOW! He even got upset when I told him to stay a little bit closer to me. In fact, I believe he said something like, "I'm going to swim away from you FOREVER!" See how that works out for you, Sammy!

Elijah has his first appointment tomorrow with a new psychologist. The timing is great. I/We need her more than ever. Thanks for checking in!