Thanksgiving Weekend 2015!

What happened to the past week?! We had such a nice Thanksgiving weekend. The food and company were wonderful. We invited Elijah's bud over the Friday after Thanksgiving and it was so much fun to have her here with us. We did our traditional Christmas tree shopping and spent the rest of the day decorating it, along with the rest of our house.



Oh no, we're the Griswolds. :)



Fish lips!



Elijah of course remembered that Sammy put the star on the tree last year, so he got to do it this year.



Dan and I have been wanting to clean out our HORRENDOUS storage closet for literally years. On Friday as we were decorating, we just decided to start. It became a HUGE ordeal and our house was a complete mess while we sorted through tons of junk. After a couple days of work, storage looks amazing!

The boys have had a good week at school and Dan and I have been working and doing the weekday routine. I'm still working in Cannon Falls and will be there for another week or two. Once I'm done, I will probably be done for good which is both good and sad. It has been such a blessing of a job, but this season is coming to an end.

Because I know I'll want this information next year, we learned that it takes THREE WEEKS for the trauma of daylight savings to wane for Elijah. After three solid weeks, he started waking up at 5:00 instead of 3-4:00. Post daylight savings has brought some rougher days, but overall things are still soooo much better. "Rough" days now cannot be compared to "rough" days a year ago. We constantly see so many areas where great progress has been made. Especially on the rougher days, I remind myself constantly of the progress. One of the big things that we have noticed at home and at school is that he now shows remorse! He still has such a hard time stopping certain behaviors in the moment, but after they have happened he feels bad. This is good! He will now approach whoever he has wronged and apologize on his own (without prompting), which is always followed by, "I feel bad!" This is such huge huge progress!

Potty issues are also so much better. We still have a ways to go, but the progress has been amazing! I still attribute so much of the positive things we've seen in the past few months to medication. He is still taking 18mg of Strattera/day for his anxiety and we are so happy with it!

I can't remember if I mentioned this or not on here, but in the past few weeks Elijah has complained a handful of times about chest pain on the right side of his chest. It lasts for a few minutes and seems pretty intense and the last time it happened it was followed by a headache. That last time I grew concerned and called Dr. G (cardiologist). Based on what I told him, he thought it was unlikely that it has anything to do with his heart. If it happens again, he'd like for us to make sure his heart is beating at a normal rate. If it's not, we'll bring him in. It hasn't happened for almost two weeks, but I scheduled an appointment to get him checked out by his pediatrician just to be on the safe side. That appointment is tomorrow morning.

Ok, some fun things to end with..

The boys have both settled on what they would like their future professions to be. :) Sammy wants to be an art teacher (he'd be a great one!) and Elijah wants to own and operate a bakery! They talk about this all the time and it's so cute. Elijah always says that he will give free donuts to his immediate family, but everyone else has to pay. :) Sammy is already planning lessons for his art students (he wants to teach elementary kids and wants the students to call him Mr. Sammy).

Sammy is SO thoughtful and responsible. Sometimes I cannot even believe the thought he puts into things. Tonight he colored a birthday card for Dan (whose bday is on Saturday) and then hid the card under his little art desk in the loft. When I put him to bed he told me that he made sure to put all of the markers away because if he left them out, Dan might figure out that he had been making a card and then the surprise would be ruined. Sometimes I think he is soooo intelligent beyond his years. He tries to keep up with his brother on so many things and I know he listens in on our homework sessions, but I was so impressed the other day when he wrote the following (without help) on a piece of paper: 100+100=200   200+200=400   400+400=800  His reading has improved by leaps and BOUNDS! His writing, too. He has such a strong little will at times (I have sooo many stories I could share), but I know this will be in his favor one day.

There is so much more I could say. I need to post more often! Signing off for now! Have a great rest of your week.

Our presidential candidate

Due to our accumulating tiredness, we barely did a thing last weekend. We tried to catch up on sleep, but didn't get very far. For the past few nights, after multiple days of hugely cutting back on his sugar intake, Elijah has been sleeping better and later. I, however, am now getting up before 6:00 to get to work by 7:00! I'll be working in Cannon Falls 4 days/week for the next couple months. Dan will have to man the morning fort and get the boys on the bus before heading to work. I will be home in the afternoon to get them off and I'll man the late afternoon/evening routine! 

Last Thursday night Elijah told me that he was running for third grade student council and that he was doing so THE FOLLOWING DAY. We scrambled to get a poster partially made and I sent him to school hoping he'd follow through. After a little bit of encouragement from his teacher, he stood up in front of his class and gave a speech! We are so proud! His teacher said that he did GREAT. He didn't win, but he did receive a few votes! Yay Elijah!

For almost a week now, Elijah has been taking 18mg of Strattera (a slight increase from 15mg) and I think it's a great dose for him. Overall, his behavior and attitude have been great! There are still specific issues that we're constantly working on, but we are so happy with this medication. His days at school have been mostly positive, as well. His case manager has described at least three of his days in the past week as being "AMAZING." Last year at this time, nothing was amazing.

Sammy is doing great in kindergarten. I imagine he's probably the perfect little student. I have gone into his class to volunteer a couple times and he is so cute and sweet and kind. I love it!

That is all for now! Gotta work so I can get to sleep early. Thanks for stopping by.

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!

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!

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!