Fab Boys Adventures

We took our Maiden Voyage today!!  If I'm being honest, I was totally anxious. I'm guessing just because it was something new. Plus, we almost didn't go. Liam has been dealing with some digestive issues that have been causing him a fair amount of discomfort. When we told him we would go say hi to Gigi, he agreed to go. It was so, so wild to see him on that lift!! It feels like we've waited forever and that it happened so quickly, simultaneously.  I do, though, need to call and have Liam's chair adjusted again. The headrest had his head in there so snug, his neck and shoulder started to get sore by the time we got home. Nothing a little heating pad couldn't fix, but I'd love for him to just be comfortable.  Anyhoo, Gram seemed to be really excited when we surprised her. I don't think she was expecting all of us to show up outside her house, hahaha. Andrew kept pulling our hands to his seat belt to unbuckle it when we were there. He wanted to g...

I almost forgot to blog today! Pretty low key day today. Liam had a really rough morning, because his stomach hurt. The antibiotics he just finished really messed with everything. Poor bubs. Gram came to visit today, and I got the picture hung up of my great grandma under her cross. That made my heart happy. Here's to a smooth, sleep filled night!  My friend reminded me that I forgot to update about my hair! It made a big, giant mess, but I really love it🙂

Today was a pretty good day! We had a meeting with Andrew's current Care Coordinator. I say current, because they've created such a bond, that we're going to switch coordinators in order for her to her respite with him! Aside from myself, Scott, and Gram, I've never seen him show the kind of physical affection that he gives to her. He's a little schmooze! Liam likes to show off for her, too. They're both a bunch of schmoozes! Hahaha. I'm not sure why, but I had an itch to change my hair. I got a color depositing hair mask... purple! I've never done anything this bold with the color. It's only semi-permanent if I don't like it, plus it's only hair!  Hopefully I have a good picture to share tomorrow! This is my current situation, bahahahaha. 

This whole week has just been totally nuts! Mundane and nuts, if that makes sense.  They came today to do the final touches on making sure the lift was stable. We are good to go! Andrew had great reports from school yesterday (which I somehow missed, with the teacher's response to the previous day's note) and today! She even mentioned what a sweet boy he is, and I'm just so happy he's showing them that side of him.  Liam did such a great job in his Special Instruction/Speech cotreat today. He answered so many questions with his dynavox! He's still pretty junky, but he seems to be making his way back to baseline. We also got a new suction machine today. I was apprehensive to switch brands, but they aren't carrying the original one anymore. Not only does it seem to work pretty well, but it's SO quiet. That'll take some getting used to.  I was about to end this, but I just remembered something I'd love to be able to look back on. Talking to my gram toni...

Phew. Today was a doozy. A million times better than yesterday, but just crazy. I'm really grateful to have found out that the people Andrew attacked yesterday are okay. His teacher seems to be pretty understanding about what a huge adjustment this is for him, which I'm thankful for, too. She's also mentioned several times what a sweet boy he is... I just hope he can find his groove with it soon. I definitely think having a 1:1 back in the Fall will be super beneficial for him. Liam had a pretty easy day today, with just a session for school. It makes my heart happy how much he loves counting. He's also taking to animal sounds a lot lately, too. He gets a kick out of, "cock-a-doodle-doo," hahaha. Then we got down with a dance party. Scott got mandated tonight, so he should be all set to get out on time tomorrow. That way we can get Liam on the lift for the first time. I'm so excited! I'm going to dive back into my book before Liam wakes up from his ina...

It's been really wild seeing everything happening outside our living room window the last week. It went from one giant hazard, to a completed deck and fully functioning lift! I'm still struggling to wrap my mind around it. I'm beyond excited to have Liam try it out. Hopefully he'll be willing (and we'll be able) to tomorrow! I'm grateful to have had that silver lining today, because it was a crazy one, for sure! We found out late afternoon yesterday that on top of the lift install, the electric company was going to be doing some work on a transformer around the block, too. Normally, this would be no big deal, but both of Liam's suction machines aren't holding a charge right now. His pulmonologist is out of the office, and the on call is working on getting a new prescription (because, why wouldn't we need a new prescription? Just makes sense. Hahaha.) Anyhoo, we couldn't go without power and without a suction, with how junky he's been, and we ...

I think I may have made a mistake. Since Liam wasn't (well, isn't) feeling well, I decided to give him his tablet in bed. That way he could watch his beloved "5 Little Ducks" while also watching Shrek. Now it's a bunch of kid's songs on repeat, hence the title of today's entry. I say I might have made a mistake, but I don't actually care. I might be a push over, but if it makes him happy, it is what it is, haha. I canceled Liam's therapies today, because he was still running a low grade fever and was super junky. If there's further improvement, we'll try for therapies tomorrow. He slept great last night, but I found myself scared, waking up every 20 minutes or so to check on him. I'm really grateful that it was just for my peace of mind, and not necessity. I ended up taking a nap while he did, after I got AJ on the bus.  When I went to get Andrew off the bus, I was absolutely floored to see that the aide today was my "Aunt Colie....

Not too much to write about today. I think AJ may have brought something home from school. Today Liam was so super junky and has the squeakiest voice. Andrew got his normal bath, and I did a makeshift bath for Liam. After I got Liam settled, I asked if the bath made him feel any better. He responded to me with, "a berry, berry lot better." So at least he's in good spirits.  Hopefully we have a smooth and restful night. The only picture I have from today, is Penny sleeping like a dingbat, hahaha.

Today was a good day! It started bright and early by getting Penny to the vet by 8:30. She needed her nails cut and a bordatella (I very well could have spelled that wrong) shot. We are taking the boys on our very first family vacation next month, and we're going to board her for a few days, so I wanted to make sure she'll be safe from picking anything up there. Super shortly after I got back home with Penny, Michael showed up for respite time with Andrew. It makes my heart so happy how excited AJ gets to see him! They hung out here for a little while, and spent the rest of their time at Michael's house with his son, Mikey. With the pictures Michael sent me, it looks like Andrew had a great time!  Right before they left, our very dear friend, Mona, aka MoMo came over. Not only do the boys adore her, but I don't have enough good words to explain her. She is quite literally the definition of having a heart of gold. She is one of the kindest, most compassionate...

Today was a pretty low-key day. Liam didn't have any school or therapies today. He wanted to stay in bed, and he took a really great nap. I think he's trying to catch up from his ear infection kicking his butt. Andrew was excited to get on the bus today, which made me excited! I'm over the moon that for the last two days, his teacher has said he's said good days! So excited, that I absolutely, unashamedly took a picture of his notebook. As you can see, I thanked his teacher for sending home all of his artwork, too. I got him settled in with a snack and cartoons when I went to go and check his backpack. When I saw his paintings and coloring pages, plus his worksheets, I couldn't help but to find my eyes filled with tears of pride. I took his painting in the playroom, and asked him, "buddy, you did this?" The look of shock on his face cracked me up, so I clarified how beautiful I thought it was. How smart I know he is. How proud of him that he...

Today was a good, albeit crazy day! I opened the living room curtains first thing this morning to watch for AJ's bus. Immediately, I saw Bob through Ramp It Up starting to set up a workplace. Scott and I had no idea that today was the day they were starting the deck! The concrete was poured for the foundation back in May, so we've been chomping at the bit to see what they'd planned! It kind of felt like it wasn't real until we saw everything happening, because so many other plans had been made and fell through. This has been in the works for a little over two years! Every other plan they'd come up with, something always... ALWAYS popped up to make it not feasible. When we bought this house in 2019, we admittedly thought it was going to be way easier to make accessible. Whoops!  Anyhoo, the only things left until we can get Liam's chair safely in and out of the house are some more balusters to be put up, and the lift install! It's already delivered locally an...

Today started off fairly normal. I didn't sleep well, but that was it. I got Andrew on the bus, and decided to try to lay back down for a little while. Liam was having a heck of a time, though. Finally, after going through a whole list of what could have been bothering him, I'd asked him if his ear (the same one that became infected with the air quality shenanigans a month or so ago) was bothering him. When he'd told me, "I've got a big, bad boo-boo" and grabbed his ear, I decided to grab the otoscope. Sure as anything, there was fluid around his eardrum, and everything was starting to look red. We had a whole bottle, plus some, of his ear drops left, so I started those up for him and called the pediatrician. Last time, they did an oral antibiotic with the ear drops, and they kicked it right out quickly. Naturally, his pediatrician is out of the office until next week, and all of her colleagues think I'm the most incompetent person on the planet. I tried a...

Today was a much better day! I got a note from Andrew's teacher that he had a miserable moment, but that they were able to use some of my pointers to redirect him. That makes my heart so stinkin' happy, because that was one of my top sources of anxiety about sending him back to school.  He's also had a really tough time riding the bus. I'm pretty sure that's because he hasn't ridden a bus in over three years, and the bus he rode back then was half the size of this one. It has to be overwhelming and over stimulating! Today he not only got off the bus with a big smile, but the driver and aide both said he did great.  Then for dinner, he ate shepherds pie (although I did learn that this is technically "cottage pie," because I used beef instead of lamb) for dinner. He was even seeking out the vegetables. He wouldn't take a bite without at least one pea and one carrot, and it totally blew my mind. That's a huge feat in and of itself, because we'...

Today was such a crazy day. We had anticipated taking Liam to a restaurant for lunch for the first time today, but it was just way too hot and muggy. Instead, we took his battery operated fan out to the driveway to greet AJ off the school bus. Here's him rolling his eyes at me, acting like he isn't beaming with pride.🤣 Andrew didn't have as good of a day today. Not only did the bus driver and his aide say that he'd had a hard time on the bus, but his teacher wrote a note telling me he'd gotten violent with several staff today. Andrew is one of the sweetest, most empathetic people I've ever known. The trouble is, when he has a hard time communicating, he gets super frustrated really quickly. Despite my best efforts in giving pointers on how to redirect him, since they're still getting to know him, redirection was a struggle. It hurts my heart for him to have hard days where he doesn't feel understood. Especially because he ends up feeling rea...

 Today ended up being a really wonderful day!  Liam and I virtually attended an SMA friend's celebration of life today. Scott was watching for most of the time, and Andrew even popped in quickly, too, albeit in between causing trouble. Connor, the beautiful life that was being celebrated, loved the color purple and The Beatles. (I mean, who doesn't??) Since I couldn't find a Beatles shirt that would fit Liam, he wore a CureSMA shirt and a purple bandana as a scarf. I wore one of my Sgt. Pepper's shirts and a purple bandana, too.  The whole party was just beautiful. His mom even took the laptop around to show us everything. Everything was perfect. Liam didn't really understand what was going on, so he mainly focused on trying to show everyone his counting skills, waving up a storm, and getting giddy when he saw his friends' faces who were watching, too. It's weighing pretty heavily on my mind how much I need to make him meeting someone else with SMA in person...

 I'm so excited to be starting this! I was talking to a friend tonight, and she'd shared a few entries she'd written of her beautiful boys. That inspired me to get this going! I can only imagine how long it'll take me to learn the ropes of this, but that's okay! Today was a crazier than usual day. It started off with Gigi's regular visit, which went wonderfully as always. Then, Andrew had his very first day of respite care! His respite worker, Michael, is just wonderful. We became connected through my friend, and I couldn't be more grateful. Not only is he wonderful with Andrew, but Liam has really enjoyed busting his chops. When Michael jokingly called Liam "Mark," Liam swiftly replied with his ever-so-sassy, "What'd I tell you?" As he laughed his little butt off. Andrew and Michael hung around the house for a couple of hours, so that Michael could kind of get the hang of everything that goes into Andrew's care. They ...