Saturday, January 30, 2016

Snowboarding video

This boy was almost three years old before he started walking. Back in those uncertain days, I never envisioned him being able to snowboard. I held back the tears today as I recorded this video. (I have a potential plan to get Sammy on the slopes next weekend...we'll see!)

video


Friday, January 29, 2016

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!

Friday, January 22, 2016

A testimony and a punch

It's the weekend already?! This week flew by, as they all do. Dan and I started the week by terrifyingly getting up in front of our church and sharing a testimony about the miracle we experienced when Elijah's ear was healed a few years ago. I avoided speech class at all costs in high school and college, but it was strongly on my heart to stand in front of 500 people and share our story. I knew it would be good for us and I hoped that it might bless others. It felt so good to get it out! You can watch it here (we speak about 15 minutes before the end of the sermon)! The healing that occurred inside Elijah's ear can only be explained by a miracle and I promised myself I would NEVER forget that and I also promised that I would share it with others whenever appropriate.

Elijah had a rough couple of days this week, but things are a bit better today. We moved his bed from our closet back to the boys' bedroom and since then he has been sleeping later in the mornings. We are constantly adjusting and readjusting and thinking and rethinking everything. Nothing is ever static and I suppose that is a good thing. It keeps us sharp and on our toes (when we're not unsharp and exhausted)!

Sammy, oh my little Sammy. We had some doozie moments this week! I will tell one story from Monday which sums up the week for him. The boys had the day off school, so they were ITCHING to go to the club with me in the morning. As always, I told them what I expected while they were in the child area...no rowdiness, no potty talk and no name calling. When I picked them up they let me know that each of them had broken a rule, therefore no treat from the cafe. As we walked by the cafe, Sammy said, "Well I'm going to go STEAL something then!" I said, "The police arrest people who steal!" I kept walking and heard him running toward me from behind. Just as I had the thought WHAT IS HE DOING?! he punched me as hard as he could in my back! I turned around, TOTALLY SHOCKED, and said, "Did you just PUNCH me?!?!?!?!?" We quickly got to the car and had a very quiet ride home. In our bathroom at home as I was calmly explaining to him why he was going to get spanked, he slowly poured soap into his hand. I asked what he was doing and he said, "If you spank me, I'll rub this soap all over you." THAT is how my boy thinks when things don't go his way. Instead of figuring out how to change behavior, he tries to figure out how to escape from us nasty adults. I'm sure this is partially a 5-year-old thing and partially a strong-willed thing. Whatever it is, I love him to pieces. He is smart and sweet and strong-willed and creative and such a perfectionist and I love him! Punches in the back and all!

Elijah has snowboarding tomorrow morning and then both boys are heading to Grandma's house for a fun overnight visit while Dan and I have a night to ourselves. We are all looking forward to it! Thank you for peeking in. Have a great weekend!

Thursday, January 14, 2016

Champion Water Chugger

Dan made it back from his work trip safely and we are happy to have him home. The week has been pretty standard, but today we received some news that wasn't ideal. I brought Elijah in for his 4-month post-surgery urology check-up. Things are better since surgery, but not great. He will need to have another dilation, this time followed by needing to be cathed DAILY for six months following. It's a bit of a punch in the gut. We were hoping to put this hurdle in our past. As always, we WILL get through this and come out stronger and hopefully Elijah will be finally be healed from this particular obstacle.

At his last urology appointment (before the last surgery), the doctor required that he have a full bladder and we ended up being in the office for 2.5 hours waiting for his bladder to fill up. This time he needed a full bladder, as well, so when we walked in Elijah declared, "We are NOT going to be here forever like last time." The nurse did an ultrasound to check bladder size and informed us that it wasn't full enough. I looked over and saw Elijah absorb this news and then proceed to start CHUGGING an entire bottle of water. He set it down and asked for a refill and then CHUGGED the entire second bottle, which was followed by, "We are NOT going to be here forever." Sure enough, a few minutes later his bladder was full. We were in and out in less than an hour! :) I loved his determination. I did not, however, like the two very urgent pee stops we had to make on our way home.

video

Elijah has been waking up super early again (3-4:00a), so a few mornings ago out of desperation I pulled him into bed with me and squeezed him tight with the Hug Machine in mind. It worked! The first night I tried it, he was up at 3:30 and my Mama Hug Machine helped him to sleep until 5:40! He NEVER would have gone back to sleep on his own without it. I don't know if I'll do it every day (I will occasionally need more than 5 hours of sleep/night), but it's good to know it helps!

We don't know much else this week! Have a great weekend!

Saturday, January 9, 2016

Slopes and snuggles

One week of 2016 is done! My week started off a bit rocky after catching Sammy's little sickness and also struggling getting back into the swing of things. After two weeks free of a schedule and a totally crazy holiday month, it was almost like I was experiencing Holiday PTSD. The week improved and we are getting back into the groove. By WE I mean ME because everyone else in my family seemed to bounce back without a problem! :)

Elijah is now officially a snowboarder! I signed him up for Courage Kenny's adaptive skiing/snowboarding program and so badly wanted to get him into skiing. I started skiing when I was a kid and I always envisioned my boys skiing young, too. The only openings available were for snowboarding, but I signed him up anyway. Guess what! The location they placed him at is THE SAME ski resort where I learned to ski as a kid. As I stalked Elijah and his instructors today, I discovered that he was learning how to snowboard on the EXACT same hill I learned to ski on. I couldn't help but get nostalgic and a little emotional. It's so crazy how things work out! Who would have ever thought.


I was worried that Elijah would be anxious about snowboarding, even though he seemed pretty excited about it beforehand. He did way better than I ever could have imagined. He liked having a hand helping him most of the time, but toward the end of the lesson (in the FREEZING cold) he went hands-free for a few seconds both on the way down the hill and on the "magic carpet" ride up. He was so genuinely excited about today and the progress he made. Eventually they will get him on a chair lift and possibly use a tether rope to help get him down some bigger hills. I'm so proud of him for being adventurous and willing to try new things!

I've been working on Sammy. Every time I ask him if he would like to ski with me he screams NOOOOOOO! Now that I've got Elijah on the slopes, I may just have to trick him. Sorry, sweetie, but you'll thank me later. He has started saying this week that he wants to learn how to ice skate, so I'm going to leap on that and get that boy in skates!

Dan left town for work today and will be gone through Wednesday, so the boys and I have some quality time on our hands. Today we got home from Afton and Sammy and I both CRASHED. Hard. Shockingly, Elijah (who should have been the most tired of all of us) stayed awake for an entire Curious George special. After that was a very snuggly pizza-movie night where Sammy kept insisting, "SNUGGLE ME HARDER, MOMMY!"

That Sammy. I still call him Sweet and Sassy (like the bbq sauce) because is the SWEETEST boy, but can also be the SASSIEST boy. He pushes his little limits and can get so upset when we stand firm with rules. It's like he can't help getting so worked up and mad about being told what to do and does/says things that go against his sweet nature. After a bit of time, he always feels bad and asks for snuggles. "Mommy, I'm moving to the other side of the planet! Please snuggle me!" :)

Elijah had a GREAT week at school, yay! Our new med dose was a good call and the transition time occurred over break...just in time for school, which was perfect. He got "great" reports every day this week. His teachers said that he was engaged and stayed on task and had a great attitude all week.

That's all for now! Have a great rest of your weekend and thank you for stopping in!

Saturday, January 2, 2016

Happy 2016!

We got home last night from our week in southern Indiana. The boys did GREAT in the car. They are such great travelers and I'm thankful for that, considering how much I enjoy galavanting around the country. Time with family was good. I have photos to share, but I've been too lazy to retrieve my camera. Or...too busy. We have been unpacking, packing, cleaning and doing more organizing since we have been home. Our Christmas tree is sadly gone, as are all of our decorations. This took a toll on Sammy. He has a tough time with this every year. He sat on the couch for 30 minutes today, sucking his thumb and processing the end of Christmas 2015. Eventually he picked himself back up and helped to pack up the decorations. He even helped to label the boxes.

Sammy has spent most of the past week sick. He has had a fever off and on, a goopy nose and a cough that kept him up for a few nights on our trip. Dan and I brought him to urgent care in Indiana because his fever and cough worried us enough. The doctor started him on antibiotics and ever since he has slowly been getting better. We got up to head back home yesterday morning and I knew I had caught Sammy's sickness. I have mostly pushed through it, but tonight I am feeling an ear infection invading the right side of my head. Dan is feeding me garlic and rubbing Thieves on my back, so hopefully those things help.

We all came home from vacation EXHAUSTED. It wasn't the restful reprieve we had hoped for, but we are glad we went. It was nice spending time with my dad, stepmom, brother and bro's girlfriend. The boys had such a good time and they (especially Sammy) fell in love with my brother's dog. When I asked Sammy what he missed the most from vacation he said, "The puppy, technology and eating SUGAR!" :)

Christmas is done, the new year is here and tomorrow we will mentally prepare for school and work on Monday. I pray that you all had a wonderful past few weeks being with friends and family! Happy 2016! May this year bring MANY blessings for you all!

Friday, December 25, 2015

Christmas 2015

Merry Christmas! We wish you all the best and thank you for being here. We had a great day filled with games, snuggling, playing, present-opening and a bit of sickness. This progression of photos will show you how Sammy has been feeling. Tonight he went to bed with a bit of a fever. We are hoping for healing tonight because we are leaving for vacation in the morning. Enjoy the faces..





Despite the sickness, we had a great day. Dan and I increased Elijah's med dosage a few days ago and we have already seen an improvement in behavior. He has been sick AND he slept only 6 hours last night and despite all of that his behavior was impressive today.

I was trying to get Sammy to bed early tonight because he was not feeling well and he was being defiant. Elijah, without prompting, saw my distress and grabbed Sammy's favorite toy and brought it over to us. "Sammy!" he said, "I'm bringing this upstairs, so you should come, too!" It worked. I was grateful because Sammy went to bed without dispute and Elijah helped...and without any prompting! After Sammy was in bed, Elijah asked if his prompting had helped. YES! Dan and I were super impressed with the forethought.

Our "big" gift for the boys this year was a little drum set. Elijah has impeccable rhythm and I have always had visions of him being a drummer at our church. :) Both boys had fun playing with the drums today. Elijah asked for exact timing, so I found a metronome app that helped him stick with a rhythm.


Right away in the morning we are heading to Illiniois. Sunday we will head to Indiana, where we will spend five wonderful days with my family in a rental home. We are so excited! Thanks for peeking in!!