Wednesday, October 18, 2017

Cardiology Checkup

I brought Elijah in for his routine 6-month cardiology check-up today. We've bought sooo much time with the cadaver valve that has been a part of his body since June of 2011, so with each passing check-up we expect to hear that "It's time!" I would not have been surprised at all if we'd heard those words today. In fact, I was mildly shocked when Dr. G told me everything was great! Wow! Another amazing report. He reviewed today's echo, along with the cardiac MRI that was done ten days ago. Heart function is good and pressures inside his heart are not yet in a concerning range. Sometimes if a valve is nearing the end of its life, an MRI will show thickened tissue that would indicate it is being stretched beyond its means. None of that is present. Praise GOD!

Elijah always amazes me with his total bravery when entering the hospital premises. If I were him, I'd be a mess! He, however, walks in confidently with a smile, flirting with the nurses and telling jokes to everyone. This kid is my hero. And so is his brother. I adore my boys!

Tonight before bed Sammy asked if we could go outside and peek at the moon. We went out just at dusk and we were able to see a few stars pop up in the sky. Sammy loves nighttime. He loves the lights that glow from people's houses. He loves the stars and the moon. Hand in hand, we took a walk together in the dark. It was precious. We promised each other that we'd take many more of those special nighttime walks.

Here's to another six months of cardiology freedom! YAY! :)

ps. BOTH boys' conferences went great this week! Dan and I are beyond grateful for the teachers they've been paired with and how well the year has started at the new school (minus some bullying which has quickly been addressed). Quick brag moment...Sammy is in the 99th percentile for math skills! Such a smart boy!

Monday, October 16, 2017

Corn Maze 2017 and more!

Well HEY! It's been a while. I have been so consumed by work (in a good way!) that I rarely think to post here anymore. We've been in easy mode for quite a while as far as Elijah's medical stuff goes, which has been great! He had a cardiac MRI done about ten days ago (standard procedure for a 10-year-old kid with a complex heart like his) and we get those results on Wednesday. I really have no idea what to expect. If we're told he needs surgery soon I wouldn't be super surprised. And if we're told we get another six months "off" I wouldn't be surprised, either. He's been a bit more tired than usual and as far as we know, he's sleeping fine (for him). There have been times in the past few weeks when he has fallen asleep in class, which is a red flag. We'll see what Wednesday's cardiology appointment brings. I haven't been stressing about it at all and I'm completely just trusting in the perfect timing of everything!

We have officially been in our new house for ONE YEAR! It's surreal, awesome, crazy and strange all at once. Dan put together an amazing play set in the backyard and the boys thoroughly loved having that to play on and a pool to swim in this summer. It is the perfect home for us and we are beyond grateful for every square inch of it! This past weekend one of the trees in our front yard lost every single leaf in a matter of minutes (slight exaggeration), so what did we do? Rake? NO! We made piles and played and jumped and played some more and threw leaves around until it looked like a tornado had come through. 

The boys' new school seems to be a mostly good fit so far. Both boys love their teachers and are doing well keeping up with their work. Elijah has been at the receiving end of some name-calling, which we have stayed on top of. We have conferences for both boys tomorrow, so I'm hoping for a better picture then.

We enjoyed the Corn Maze this year on the muddiest, rainiest, wettest day of fall. Thankfully the corn pit was covered and we all still had a super fun time.

Sammy did NOT like the birds that kept landing on his head. "GET IT OFF, MOM!!!!!!!!"

Of course this was the year that Sammy wanted to walk through the entire maze...through mud and all, with map in hand.

The boys have this entire week off school for MEA/fall break, so we're getting out of the house a bit and trying to enjoy fall and each other. There was a snafu at the health club we had a membership at, so we have an unexpected one remaining month of membership after thinking we'd been done in January. While this is super annoying for Dan and me, the boys are elated! The child area at the club is one of their favorite places, so we plan to make the most of that this week.

Dan has started defensive training with the boys and this is Elijah's don't-mess-with-me face. :) Love it!

Thanks for peeking back in, if anyone is still here! Let me know if you want more updates or if this is overkill at this point in our journey? At any rate, have a wonderful week!

Tuesday, September 5, 2017

First day of second and fifth grade!

I've been anticipating this day for a while. A new school is a big deal for our boys! Both boys seem to have been matched with really great teachers and I even got a friendly call from Elijah's new sp-ed case manager today. A meeting has already been scheduled to go over his care plan, which makes me feel relieved. Elijah and Sammy both reported having great first days! They both had a lot to say about differences they noted throughout the day. Their old school calls music-art-gym "specials" and their new school calls them "specialists." Their old school had lunch before recess and their new school has recess before lunch. It was fun listening to all of their observations.

We are within walking distance of school, so I walked them there and back home today. It's nice having that time walking with them! And no more 2 hours of driving DAILY to get them to school and back. This is a huge bonus for me! On our way out of school today we walked by lots of kids and I noticed that Elijah was getting quite a few "looks." He wears headphones when is anywhere in the vicinity of buses because the noise of the breaks drives him crazy. We don't think twice about his headphones and the kids at the old school were used to seeing him in them, but these kids didn't quite know what to think. Soon they'll both be loved, just like they were in Shakopee!

I barely knew what to do with myself today! I worked for five consecutive hours for the first time in months and I even squeezed in a non-frenzied trip to the grocery store. Success! Even though we all started going a bit mad toward the end of summer, I missed my two monkeys terribly today and was so super happy to see their smiling faces walk out of the building.

Here's to a great week, month and year filled with happiness, good behavior, good attitudes, good health and good friends!

Friday, September 1, 2017

State Fair 2017 and the entire rest of the SUMMER!

HELLO! Oh my gosh, it's been sooooo long since I've signed on. My deepest apologies (if anyone is still here!), but we've been busy enjoying summer. It has been one amazing summer filled with tons of fun things. Tomorrow we leave for our 7th vacation since May. We feel super blessed and we are grateful beyond words that we're able to squeeze so much in. 

This summer we: traveled to DC, visited my dad/stepmom in Charlotte, swam a lot in our pool and played a lot in our yard, went on a 2.5-week RV trip to S. Dakota/Montana, met my dad and stepmom at Wisconsin Dells for a fun little waterpark vacation, sent each boy up to northern MN to spend SOLO time with my parents, RVed down to Iowa for our yearly family reunion and thoroughly enjoyed another year at the MN state fair. The boys completed two rounds of swim lessons at an amazing local swim school and progressed hugely for the first time ever. We've been enjoying our house every chance we get and using our RV whenever we can. Elijah has enjoyed time with his horse Trixie every Friday this summer through the amazing autism/hard-of-hearing program at Haven Acres.

Our summer in a nutshell! Today we ventured to the state fair for our annual adventure. We experienced probably the most crowded day we've ever seen (yuck), but the boys didn't seem to notice. State Fair Day is Sammy's third favorite day of the entire year (so he informed us this morning), which explains the genuine smiles you see in the following photos. When I put him to bed tonight, he was sad. So so sad because his third-favorite day of the year is over. He is SO much like his mama.

Every year I have the boys don Oink Booth crowns and pose for a photo. These pics were taken five years apart. Sooo sweet!

Pronto pups!

I cannot believe we squeezed the boys into a stroller again this year, but there really is no other way. Elijah (understandably) walks at a snail's pace and I have no idea what we'll do in the years to come.

Sammy was so happy to meet Cowwy's "family." He loves his cows!

We take this photo every year, too. I love these sweet, smiley boys so much!

One of the things I love so much about Elijah is his sense of adventure. He is always willing to try new things, despite having a medical diagnosis of "severe anxiety." He hopped onto this fast kiddie ride by himself and even threw his arms up in the air!

Squished, but smiling!

This is my favorite photo from the entire day. Sammy does not like anything that is remotely fast, so he hugged Elijah tightly from behind for a splash of comfort.

On the menu for the next few days: time up north with my sisters (back in the RV, woo!), both boys starting a NEW school (yikes!) and time for me to get work done! This next week will bring enormous change for all of us, so please pray for smooth sailing. Thanks for peeking in! IF there's anyone peeking in. Now that fall is just around the corner, I'll be here more often. Promise.

Friday, June 16, 2017

June update!

Well hello! It's been a while (again)! Sammy saw Dr. J for a well visit today, so I thought I'd stop in and record his stats. He is in perfect health, 53rd percentile for weight and 64th percentile for height!

Since my last post we traveled to Washington DC and North Carolina. It was a blast! It was one of the all-around most fun and most stress-free trips we've had in a while. Dan toured us around DC for a few days and the boys did GREAT with all of the walking. We rode a double-decker bus to Charlotte (minus Dan, sadly) and spent a few days with my dad and stepmom. We spent time in the pool, went to the drive-thru zoo (a favorite!) and hung out at their house.

We also celebrated this beautiful boy's seventh birthday (a couple times)! I cannot believe Sammy is 7! I'd swear he was born just a couple years ago. He's turning into such a fun, smart, kind, clever little person. I absolutely love spending time with him. He makes us all laugh constantly and I can't imagine our family without his cute smile. We love you, Sammy-Jammy!

We have been LOVING our house and yard as we approach summer. Our backyard is amazing and we constantly feel so blessed and grateful to call it ours. It's honestly been a huge pain maintaining the pool and I haven't got it down quite yet, but we're getting there. The boys love it, so it's worth the hassle. We get in it every day that the weather cooperates!

This week and early next week we are preparing for our summer RV trip! It's not nearly as epic as last year's, but we are super excited about it. We plan to head to Deadwood, SD (a favorite spot from last year) and then onto Montana for a couple weeks. We all loved Montana and are excited to explore it a bit more. Departure date is next Thursday! Woooo!

I have some updates to catch up on regarding Mr. E but that will have to happen another time. Nothing urgent is going on, but a few things may be brewing. He is currently receiving AMAZING support through a local organization that sends therapists into the home. His therapist has done incredible things in a short time. More later! I'll try to update once more before we hit the road! Adios!

Thursday, May 25, 2017

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!

Saturday, May 6, 2017

Catching up...and a cardiology update!

Well hello (as Elijah would say)! It's been a loooong time since my last post, yikes. Life has been a bit of a blur, but in a nutshell: we celebrated Easter (quietly this year), E had a cardiology check-up, we have enjoyed our new backyard like crazy, I visited a friend in Reno for a few days, Elijah has suffered from seasonal allergies (boo), Dan has been crazy busy at work, I turned a cookbook manuscript in to a publisher and we got our RV out of storage for the summer! Whew!

Dan is guiding a tour in Washington DC for the next few days, so the boys and I are hanging out and enjoying this delicious weather. We let both boys take the day off from school yesterday and we drove south of the Cities to retrieve our RV that has been sitting in storage since early November. The boys have wanted to do EVERYTHING in the RV, which is currently sitting in our driveway. They want to eat meals in it, play in it and watch movies in it. The second it rolled into the driveway, my entire mood changed. That RV signifies peace for me, for all of us. I love having it close and I love the idea of traveling with my cuties again this summer! 

Elijah's cardiology check-up last month went great! The stenosis in his valve is in the mild-moderate range, but heart function was great and there are no immediate concerns. In six months he will get a cardiac MRI (his first) and we'll go from there. The MRI will be able to tell us much more accurately what is going on inside his heart. Yay for another good report!

Here's hoping that May not be as crazy as April! Thanks for peeking in...have a great rest of your weekend.