Wednesday, November 26, 2014

Surgery, Santa and thankfulness.

Elijah did great today! Surgery was quick, with an easy recovery. It was one of the better recoveries from anesthesia that we've seen. I have been careful about saying what the surgery was all about in order to give him some semblance of privacy. It's sort of a private ordeal, so I don't want to scream about it from the rooftops. Catch me in person or over email and I'll explain! He was in a bit of pain afterward and had a mild fever. We will stay on top of pain meds through the night.

Elijah was, again, terrified of the mask. :( Also, again, terrified of removing the IV tape. I am thankful this is behind us! He was such a brave boy today. I could see signs of him being more self-aware than ever before, which was encouraging. He was able to recognize that he was feeling scared about specific things and he was willing to try tactics to not be so afraid. This is a first!

Dan and I always feel so terrible watching him endure pain, both physical and emotional, so we always allow him to pick out a toy afterward for being brave. So that Sammy never feels left out, we let him pick something out, too, for being a good and supportive brother. Today we picked out a toy for both boys to share, a new Lego Movie lego set! They were both SO EXCITED. Oh my goodness, they were happy boys!

One thing Elijah said repeatedly today in the midst of his discomfort was, "MOMMY! I miss you!" When I finally asked what he meant by that, he said that he missed me when I have to be at work so much. :( Ok, this kind of kills me. Obviously we all need to work, but I have been working an exceptional amount lately and obviously it is affecting our family. If Elijah can verbalize it, it means something. Thankfully things will start to slow down soon.

Here is the boys' photo taken with Santa from last weekend! (yes, I believe Santa's bare belly may be showing..)

Tomorrow will be busy, but I'm hoping we can take some time to breathe and be THANKFUL. We have so much to be thankful for. I am looking forward to four days of no work and tons of family time. Friday will be our annual getting-our-Christmas-tree day and we will spend the day decorating our house. We are all looking forward to the next few days! Thanks for checking in and HAPPY THANKSGIVING! Hug your family. Tell them how much you love them. Be thankful!!!!!

Tuesday, November 25, 2014

Accidental snot

Sammy was extra tired tonight and having a tough time getting through dinner. He threw his fork onto the floor and when I asked him to please pick it up, he did his I'm-stuck-to-my-chair-and-can't-reach-it routine. This went on and on. Dan brought him to our bedroom for a little timeout. A few minutes later, he quietly came downstairs and said, "Mommy? I'm really sorry for what I did in your bedroom." I asked what happened. "I accidentally rubbed snot all over your bed." Seriously.

Elijah had a few rough patches at school today, but he confessed a major one to us before we even heard about it from his teacher. This is a new and huge thing! The behaviors we are hearing about are not ideal, but it is a big step for him to communicate not just that "something bad" happened (or not to mention it at all) but to actually explain the details. We are thankful that he will have a big chunk of time off school. Tomorrow is surgery, so if you wouldn't mind praying for it to be quick, painless and successful we would appreciate it!

Monday, November 24, 2014

Package directions

Since I'm on a roll sharing Sammy funnies..

Today our boy who is ALWAYS looking for a way to get us to give him sweets said to Dan, "Daddy, it sure is cold outside! I bet some hot chocolate and marshmallows would warm us right up!"

Tonight after Dan gave him an Oreo cookie for dessert, Sammy said, "I think it says on the package that each kid should eat TWO cookies." Nice try, Sammy. :)

Today was another odd day involving LOTS of stressful driving on icy, snowy roads. We aren't sure how Elijah's day at school was, but his spirits sure were great at home tonight! Dan took him to get his pre-op physical this afternoon, so he is set for a minor surgery on Wednesday.

More later!

Saturday, November 22, 2014

Uniquely awesome day

I'm going to try to be so much better about writing down the things that make me laugh. On our way home from our friends' baby shower tonight, the boys were playing on our phones in the car. Sammy was apparently trying to purchase a new app, so when the little box popped up to enter my iTunes password he said in total seriousness, "Mommy? How do you spell 'I really want this game a lot'?" He was totally ready to type it in. :)

Today was very strange in a good yet tiring way. We started the day off with a Hope Kids event at the Mall of America. Hope Kids is an incredible organization that provides opportunities and events for a select number of kids who have life-threatening health conditions and their families. This event was awesome. It was held at an arcade inside the MOA, so the kids were able to play endless games and also make crafts, decorate cookies and get their photos taken with Santa. Sammy was particularly excited about seeing Santa for the first time and made a point to say to him, "Look at my monster shirt!" The boys had a blast and we even ran into their cousins, who are a part of Hope Kids, as well. We also saw a kindergarten teacher from Elijah's school who was volunteering for the event! I recognized her, but had never talked to her before. Just like the other kindergarten teachers at his school who we love so dearly, she is awesome! We let the boys ride on a few rides at Nickelodeon Universe and on our way to the car I ran into an old coworker who I hadn't seen in years!

After a family "nap" in our cozy, pillow-filled bed, we headed out again to the north side of the Cities for a baby shower. Two of our skydiving friends are expecting their first baby and are back from Florida for a few days, so we couldn't pass up the opportunity to see them. It was such a fun treat to spend time with them, as well as the rest of our skydiving family. Elijah and Sammy (and us, too!) were EXHAUSTED at the end of it all, but it was such a unique day filled with different kinds of fun and people from different parts of our lives.

And that is all! I'm off to work for a bit and then snuggle with my hubby!

Friday, November 21, 2014

Inner-lasting gom-stompers

One of the many things I have learned in the past few years is that nobody wants to hear me complain about how busy we are. Our busy-ness is no different from your busy-ness. We're all running the same rat race, trying to earn money and spend time with our kids and balance a hundred spinning plates simultaneously.

Like the rest of you, we are desperately trying to keep our plates spinning. I feel guilty constantly about not spending enough time with my three boys, but I am starting to see the light at the end of the tunnel. The time I do get with them is so sweet. I sped home from work tonight and made it in time to catch the tail end of pizza-movie night. Sammy snuggles have never felt soooo good and the love bouncing around our little living room walls has never made my heart feel so full.

I have to throw in some light-hearted goodies first tonight! Sammy says things constantly that make us laugh. He has always been so funny and creative with his words. I have not been as good lately about writing everything down, but have remembered a few.

We haven't let the boys watch Willy Wonka in a while because Elijah was imitating Veruca Salt's whiny, icky talking way too much. One of the things from the movie that the boys still talk about is everlasting gobstoppers. Except, Sammy pronounces it "inner-lasting gom-stompers."

When I get home from work or when I'm putting the boys to bed, Sammy says to me, "Mommmmmmmmy! I want you to be with me forever. Never leave me. Stay with me for 101 hours!" He likes to wrap his entire torso around one of my arms and say, "I missed you sooooooooooooo much." Sometimes he adds, "And I missed your phone." :)

Tonight Sammy was trying to convince all of us that he had a second middle finger on his left hand and that it got stolen. "A policeman came to get it. My second middle finger is in jail!"

Elijah's behavior at school and at home has been up and down, slooooowly descending out of the boiling point (but still very much in the boiling range). He's had some great days and some not-so-great days. Still, his sleep continues to suffer due to his brain being overwhelmed and exhausted. Every third night or so he sleeps great, but the other nights are awful! This morning he was up FOR THE DAY at 1:00am. You did indeed read that correctly.

I just got done reading an awesome book. I want Dan to read it and then I want to implement some strategies from it. It focuses on understanding that kids like Elijah are severely delayed in certain ways and are totally incapable of handling frustration and change and responding to direction like most others. The author suggests an approach to parenting that Dan and I have never tried. I'll explain more once we start!

We continue to trudge on, hoping that his brain will eventually catch up and be at a more peaceful place. A long weekend next week will help, but throw in a little surgery and family commotion and it might not be as much of a recovery as we'd like. It feels like we will never get him back to a good spot, but I have to remember that we are doing our BEST right now. Literally, we are doing everything we possibly can, short of removing him from school until he is recovered (this would take weeks, so isn't exactly feasible). Just keep swimming....just keep swimming...

We have a few fun things planned for tomorrow that the boys are super excited about! We have to squeeze them into a compact timeframe in order to lessen stimulation for E, but it'll still be tons of fun. Thanks for checking in and have a great weekend!

Saturday, November 15, 2014

Croup: Season 7, Episode 2 (Elijah)

While Dan was working overnight two nights ago, I heard some screaming over the monitor around midnight. I almost always approach Elijah's bed first, as he is typically the one yelling for me. He had croup. I plucked him out of bed and brought him into the bathroom to determine how severe it was. It was mild, thank goodness. I turned on the shower and hugged him tightly for ten minutes. Afterward he sounded slightly better, so I gave him a dose of oral steroids. Turns out, he slept horribly the rest of that night and the night after. Any medication in his body kills his sleep! We are praying for a much better night of sleep tonight.

We spent a super duper low-key day at home today. We cleaned, cooked, colored, did laundry and played. It was nice. Really nice. Minus church (can't wait for church!), tomorrow will be much of the same. Thanks for peeking in! Have a great rest of your weekend.

Wednesday, November 12, 2014

IEP meeting 2014

We had possibly the most positive and promising meeting (of the seemingly 100) that we have ever had with Elijah's team at school. This was his official IEP meeting where we put plans in place for the next year while he is in school.

I requested starting the meeting with a little talk and the team allowed the overly protective mother to speak. :) Since Dr. M couldn't join us (he will be joining us on Dec. 1!), I wanted to stress the pervasiveness of NLD on Elijah. I explained how difficult it has been to get people to understand what WE know about him, so I attempted to describe it with a visual aid.

When Elijah is at his best, he is riding just below boiling point. Boiling point is the point we all get to occasionally when we stretch ourselves too thin, don't get enough rest and don't give our bodies proper nutrition, etc. When we get to that point, we begin lashing out at others, we are unable to control our emotions and we don't sleep well, among other things. It does not take much for Elijah to get into the boiling range. Once he is there, it takes him a looooong time to come back down. This process can take weeks or months, depending how thin we stretch him. A more typical progression into boiling point is a much more gradual curve. It takes time for most people to reach that stage and once we get there it is much easier to come back down to a normal range.

An important thing to point out is WHY Elijah is like this. Why does his baseline sit just below boiling? At some point during, before or after his birth, his heart condition and resulting improper bloodflow/oxygenation damaged some pathways in his brain. This caused his brain to re-route, like a detour. Imagine yourself driving down the road, intent on a destination. Maybe you have an appointment you have to get to within a certain timeframe. Suddenly you encounter a detour. You are forced to stray from your path, taking turns on uncertain roads and at times going in the complete opposite direction from your destination. Eventually, though, you return to your path and you arrive at your destination, although you are now frustrated, tired and LATE.

This is how Elijah's brain operates, which carries the label Nonverbal Learning Disorder. He can arrive at the same destination as the rest of us, but it taxes his brain to do so. Interpreting a social situation or processing a busy, noisy grocery story might be enjoyable things for him, but they require a lot of extra processing. This puts his brain into overload, which renders him incapable of doing much beside just scraping by.

Elijah's team was so awesome. They were receptive to my little speech and said so many positive things about our oldest boy. They described him as friendly, happy, smiley, affectionate and kind. His teacher told us that he is the most affectionate student she has EVER had. Just like at home, he always seeks physical closeness and hugs from adults he trusts. They seemed to understand that his negative behaviors stem from the NLD and that it was going to be a process to get him back to his baseline. In the past few school days he has been showing signs of improvement with name-calling and aggression, which we all see as a very positive sign.

There are a few strategies in place which involve OT, social and behavioral coaching/intervention. Starting immediately, he will receive two 30-minute sessions away from class with his sp-ed case manager every day, as well as 15 minutes each at the beginning and end of each day where he can gradually integrate into and out of class. In addition, he will receive 15 minutes twice/week with his DAPE teacher (adaptive PE). We will continue doing partial days and re-evaluate at the end of December. I made sure to let the team know that Elijah is likely (99.99%) to not be ready to return to full days any time this year unless we want him to soar back up into the scary realms of boiling. Mr. F assured us that nothing would be written in stone regarding length of school days, so we can play that by ear. I asked about getting Elijah an aide, and Mr. F explained that the resources aren't available at this point to give him an adult dedicated solely to him. However, he is hoping to shift aides around a bit to accommodate E a bit more while he is in the classroom.

I am looking forward to our meeting with Dr. M on December 1st. I know he will have insight to share with E's team. We plan to bring him down to the classroom to ask for suggestions about reducing E's visual processing. We are so thankful that his team is willing to attend yet another meeting to better understand our oldest cutie and we are thankful that we have a(nother) incredible doctor who is willing to go to great lengths to make his life more successful.

That's all for now! Dan and I have not spent time together since last Wednesday, so I must go snuggle with him. This coming weekend will be a much-coveted time together as a family. ALL of us will be together! I can't wait! Have a great week and thanks for peeking in.

Thursday, November 6, 2014

Pumpkins, Halloween and meetings at school.

Do I say this every week? Working away from home full time makes the time absolutely fly by! This is my fifth week working in Cannon Falls for the fall and I miss my boys so much. The Sammy and Elijah hugs I get upon returning home every evening are the sweetest things about my entire day.

Halloween was fun! We did our annual family pumpkin-carving evening one day last week. The boys were more involved than they have ever been before. 

Here is Dan, intent in his carving. Notice Elijah's tired gaze? This is something we see a lot lately.

Sammy and I carved our pumpkin in no time. Ghosts in the graveyard.

Sammy hiding from a photo, as usual!

The gooey stuff around Frankenstein's carvings is glow-in-the-dark paint.

The one typical NLD characteristic that Elijah definitely does NOT have is limited facial expressions. :)

My silly, adorable Sammy.

The boys scored with candy on Halloween. We took them to a nearby mall for trick-or-treating and then brought them back home to go to a few houses in our neighborhood. They love handing out candy to kids who stop by our house, so we always make sure to leave room for that. When the doorbell rang, they would RUN to the door and hand out candy while shaking (Elijah) out of excitement.

This year Sammy did what I used to do as a kid. He laid his candy in rows and counted it all. He memorized exactly what he had. I know this because I may have stolen candy from his pumpkin after he was asleep and he totally busted me the next day. He blamed it on Elijah..."ELIJAH STOLE MY COLORFUL LICORICE!" I haven't touched his pumpkin since. The kid knows. Don't mess with Sammy's candy.

I got costumes for the boys last summer super cheap, but Sammy insisted on wearing his robot costume for the THIRD year in a row. :) He might still be wearing this when he's 12. He did willingly wear his cute new Toy Story alien costume a few weeks ago at another Halloween party. Could two boys possibly be any cuter?!

Cute blue super-crayon (Elijah added the "scary mask") and robot, trick-or-treating at the mall!

And this is what I walked in on this morning before leaving for work. Genuine early morning brotherly love. These two love each other so much!

Dan and I had another meeting with Elijah's team at school this week. It was a tough one for us. We were informed that Elijah's behavior has been getting progressively worse while at school, which has included frequent physical aggression and name calling. Dan and I were both startled by some of the things we read in the eval report. Since, we have been in closer communication with his teacher so we can appropriately discipline on days when he becomes physical and calls names.

Next week is our official IEP meeting. In this week's meeting, his teacher pushed for getting an aide in the class who would be solely dedicated to Elijah. She told the team that she pretty much has most of her focus on one child throughout the majority of every day....Elijah. :( That obviously stretches her and detracts from her relationships with the other children. Dan and I are on board with this, so we will see what the team thinks next Wednesday.

Still, we do not feel understood. It seems like the majority is placing focus on ASD instead of NLD, which makes sense considering his new special-education label at school is ASD. I kept mentioning Elijah's tank being totally empty and him being above boiling point, but I received a lot of empty stares back.

I called Dr. M, E's neuropsych, today and asked if he would be willing to come to school to chat with the team. He said he absolutely would! Music to my ears. I feel like he could word things differently and not be the "protective mother" that people hear in these meetings. I'll attempt to set up a meeting for early December so that can happen.

More later. I'm tired. Dan will be away for the weekend hunting, so the little boys and I have some fun planned (cleaning! baking! sleeping!). Thanks for peeking in. Have a great weekend!

Sunday, November 2, 2014

Keep doing what you're doing.

October is done! We accomplished so much last month, work and fun alike. November will be busy, too, but not quite as crazy. Elijah had a really rough day at school on Friday. We've been keeping a detailed journal of every aspect of his days (nutrition, activity, screen time, sleep, etc), so I have been able to look back and see patterns with certain things. He has slept horribly for the past three nights and the only real difference is that he didn't fall asleep until 7:00 or after on those nights. His bedtime routine is lengthy and sometimes we have potty issues that keep him from falling asleep right away. Instinctively I have always known when he needs to be sleeping and when that doesn't happen, I get stressed out! Last night I knew he needed to be asleep by 6:30 and when that didn't happen I knew the night would be bad. His fitbit showed that he was awake for a lot of the night and up for a solid stretch from 1:15 to almost 3:00. That is the third time that has happened in the past week.

Some behaviors have popped up with Elijah recently that are unique. Suddenly when left alone, he acts like a two-year-old and becomes destructive. I've found cupfuls of water poured onto the floor, soap emptied onto the floor/sink, kleenex boxes thrown into the toilet and peed on, hand towels put in the toilet, toilet paper unrolled and strewn around the bathroom, toys have been thrown across the room, and the list goes on. I literally can not leave him in a room alone anymore. I'm hoping these new behaviors are an effect of feeling overwhelmed and out of control and that once his tank is filled up a bit they will lessen.

He has also been super obsessive about certain things lately, especially times. He has to know exactly how many minutes every given event is going to take. If we watch a show or movie, he needs to know the EXACT number of minutes it will take and he keeps a tally along the way. He knows exactly how many minutes every kids' movie in our home takes to watch. There is a CD we listen to in the car that the boys love and he keeps very close track of what number each song is and how long each is, etc. It gets out of control at times, and I never know if I should feed into his need to constantly know such minute details about everything or if I should try to make it seem like it's not a big deal. I know it is control for him, in a world that makes him mostly feel out of control, so there is definitely a fine line.

Elijah did not start his partial days at 100%, so it is going to take a while for progress to show. I hope his team at school understands this and doesn't expect to see an immediate change. Dan and I are committed to doing EVERYTHING in our power to help him get back to baseline. There are a handful of things we can control, such as nutrition and bedtimes. Today I decided to start our bedtime routine at a ridiculously early time so we can be sure to fit everything in and factor in time for potty issues. Dinner: 4:30. Bath: 5:00. Potty time: 5:30. Jammies/brush teeth/books: 5:45. In bed: 6:00. Asleep (hopefully): 6:30.

There was an awesome moment in church this morning at the end of worship when total peace swept through the room. Everyone was silent and we could all feel HIM right next to us. During that time, I felt like I wasn't even breathing. My body and mind were both so still and quiet and totally receptive. I had some distinct thoughts/messages come to me: the main one was GRACE. We need to have major grace with Elijah during this time because his behaviors are out of his control. Next, I heard the words, "Keep doing what you are doing." Then I thought of music and swimming. Once Elijah is closer to baseline, I think both will be very calming and helpful tools for him. I sense that music is going to be a source of peace for him and we all know how calm the water makes him feel.

I owe Halloween pics! Halloween was fun. It totally wiped E out and keeping him up till almost 8:00 had us paying for it the rest of the weekend, but both boys had a blast and looked as cute as ever. My next post will be Halloween photos, I promise! Thanks for checking in.