Sick Daze

Little Miss Grace hasn't been to school since last week. She, and her brother, missed swim lessons this. She couldn't go to soccer practice. 

She's not a happy camper. 

She HAS, on the other hand, had the chance to watch about 756 Disney movies and shows. So I don't feel too bad. 

Her cough is gnarly. I took them both to the doctor for fear that they had caught the flu that's spreading like wildfire around here. They tested negative, luckily, so I guess it's just a gross virus that's going around. She's not really running much of a fever anymore, just has a bad cough, a runny nose, itchy eyes, body aches and a low grade fever. Caleb had a runny nose with some thick mucous but it's already getting better. He's got a bit of a cough but not like Grace's. 

I'm fighting tooth and nail to avoid this illness. I've got a wedding to attend in just over a week so I really don't want to end up with it. 

Pray for me.

A few updates that definitely need their own blog posts but those will have to wait:

1. We're building a house!!!! We signed the contract, paid the cash to hold our lot, and started picking out options for the house! It's happening! Why? Well, stairs were a bad choice for our family situation. I love our current house so much, but those stairs are already a problem and I'm worried they're going to be even more of a problem as Caleb gets bigger and bigger. So, our new house is one story! And, even better, it has a private suite on one side of it that will be a perfect option for our family in the future for so many different scenarios. I'm very excited! 

2. I'm back working out 5 days per week! It feels so, so great. I missed it. 

3. Caleb got accepted into a special needs private school a few miles from us that I think is going to be great for him next year, and beyond! 

4. Ben and I just had date night and it was awesome! Sushi!!! :) 

5. I'm loving my photography class and I'm feeling like I could actually get some great shots! I'll start posting my good photos on the blogs soon hopefully (because Ben bought me a new laptop that makes it easier to download my pictures and blog all in or place)! 

So, plenty for me to write about in the next few weeks so stay tuned! 

Poor kiddos!!!! Hopefully on the mend now! 

Little Champs

Little-Miss is a bit of a soccer champ! It's been so cool watching her improve bit by bit from a few weeks ago when she first stepped onto the field with her shin guards on outside of her socks instead of inside...

She's been pretty determined to improve and score more goals each week. She didn't get a chance to practice with daddy last week like she had been but she still came out to her game today ready to go! Of course, we had a couple small hiccups with mommy not knowing where the field was and therefore bringing grace 10 minutes late to the game, and then little lady getting in trouble for running off to play in a dirt pile instead of staying by her team when she wasn't playing...but otherwise she was in it to win it!!! ;)

I'm pretty sure she ended up scoring six goals today. She's a second half player it seems; it takes her a bit to get warmed up and going. She started off timid and just sort of following the ball and whoever was kicking it around the field. By the second half, though, she was getting aggressive and chasing down the ball, turning it around, and dribbling all the way to the goal! 

I think what's most impressive to me is the fact that she seems to actually "get" the game now. At only four years old and with no experience with the game, she's picked it up really quickly. After only a few weeks, she knows to keep the ball in bounds and that if she kicks it out, it goes to the other team (that's a hard one! She's one of the first on the team to figure it out I think). She knows to get in front of the ball to block it if the other team is charging and she'll run to stand in front of the goal if she can get there in time. She also knows not to use her hands at all and takes every opportunity to let the other players know if they've forgotten that rule...

#fouryearoldsoccerisadorable #hotmess

I'm slightly biased but I think my little girl is a soccer genius! ;) Now it's time for mommy to maybe learn a bit about the game. 

Or maybe I'll just keep pushing the swimming...

I have to note that I had SO much fun with Caleb tonight. After nap time, I took him to the grocery store alone. The last time we did this was rough but the last time I took grace alone wasn't a walk in the park either so I opted to try my luck with little man. 

He's a tough one, we all know that. He understands more than he lets on and he has a lot of opinions he can't express. He gets mad seemingly out of nowhere and fixates on things that don't make sense to you and me. Getting him ready to go takes enough work to make me second guess my decision to leave nearly every time, but trips like tonight's are the reasons I keep on trying. I won't ever give up on my little guy, he keeps proving he's worth every bit of effort. 

We had some fun upstairs after he woke up from nap just cuddling in his room for a bit and then I asked him if he wanted to go in the car to the store and he immediately popped up to go. We spent some time hanging downstairs eating a snack and watching some Tarzan with daddy and sister before I finally got his diaper changed and braces and shoes on, two of his least favorite things ever. He managed it pretty well and then had a great trip to the store jamming out to some hip hop and country music. 

Then, we pulled into the parking lot and I got a phone call. Chaos ensued and he let me know very clearly that he wasn't happy. Was it the phone call? The music being turned down? The fact that he saw the store and remembered the last couple of trips? Or does his head hurt? His mouth? His foot? 

I got up really close to him once I parked and hung up the phone. I told him I was here, right here with him, and explained exactly what the plan was. He calmed down, then got mad again, then calmed down again. He let me carry him all the way up to the store, but got mad right before the entrance, so I quickly hurried to the entrance where the air blows really hard on your head as you walk under it. I knew he liked that so we stood together there for a bit to take his mind off of what was stressing him out. We bounced together and laughed. Once I knew he was calm, I hurried to the cart-another seeming trigger. He got mad again and fought me the whole time I was strapping him in but I kept reminding him that he'd get a snack once he was buckled and we made it through. 

We spebt the next hour and 15 minutes slowly making our way around the store, eating goldfish, counting the apples, feeling the avocados, singing about the ocean, taste testing deli meat, and squeezing the frozen veggies. We listened to some music on my phone near the end when his patience ran a little low as I paid for our food, but mostly he just wanted to watch me dance in front of everyone. He made it all the way through the store, through the transition back into the car (after some fun running with the cart in the parking lot of course), all the way back toward our house, and then INTO A RESTAURANT to pick up some dinner (and wait in line?!?! What?!?) without one tantrum, meltdown, self injury, or aggressive behavior. Not one. Zero! 

Not just that, but little man sat through dinner and made it through bedtime without an ounce of resistance. We just played and talked and ate and sang and prayed five times (Grace's favorite thing to do at family dinners) together.

Just lovely. It's like Christmas and my birthday and vacation all wrapped up into one. It's just the best feeling spending a wonderful afternoon with my Caleb. He's my hero and my favorite little boy in the world. 

Today was a good day. 

And here's a little Caleb and Grace snuggle/tickle session from this week just for all the feels: 

Recovery

Just a quick note to say that Caleb has completely turned the corner and he's doing much better! He's back to eating and running around like his usual energetic self!!! I even got two nights of sleep with no wake-ups which is beyond miraculous right now!

We have a referral in to see a new geneticist who specializes in metabolic disorders, so I'm excited to get a new geneticist working on Caleb's case who might actually care to dig a little deeper. 

Grace had soccer practice tonight and still loves every minute of it. Both kids did great at swim lessons as well yesterday. Poor little man started screaming crying when they laid him on his back to float so I asked them to stop and give him some time. About 3 minutes later he burped so loud it startled everyone! After that, he was fine! This has all been another lesson in how important (and challenging) it is for us to listen closely to Caleb's cues and trust our instincts! If I had just looked in his mouth earlier last week I could have saved him a lot of pain! I'm glad I didn't let his swim instructor continue pushing the floating yesterday. Poor kid was just gassy! 

We're going on three days without Daddy this week as he's on a work trip in PA (we miss you daddy!) and so far we're managing pretty well. Thank God he wasn't on his trip LAST week! My dad came to help on Monday night so I could go to my photography class (the kids were BEYOND thrilled to hang with papa, he's the coolest), and I've had help from the providers so it's going well. I'm so grateful he slept the last two nights! 

We've got another early morning tomorrow for Caleb's bus so it's time for bed! Oh, did I mention I did another ridiculous squat workout that's left me nearly useless? Poor timing on that, but hopefully I can sleep it off tonight...

Swimming fiend! 

Soccer star! 

PAIN!!!!

How YOU doin'?

January

Last day of January and I'm feeling tired but really glad that I captured this month on the blog and revitalized my desire to document our very unique life here on Roger Way. It's also reminded me of how much I love to write and how wonderful of an outlet this has been for me. 

I don't think daily blogging is realistic right now, at least not a full documentation of each day. Back in 2012, I created a new theme each month. This year I think I'll keep it simple with a general goal to document our journey. I'll probably do a weekend recap post, maybe a Wordless post from time to time with a poignant image I've captured during the week, and hopefully some fun details of what makes us "us". This is a great cheap version of therapy but also an important way to bring awareness to the world of special needs, particularly rare disorders. I've said it before, but it's not just my job to teach Caleb about the world; I need to teach the world about our Caleb. 

January 2016 brought some massive developments in the story of our family. We started Caleb on his first attempt at medication to help him cope with the world around him. Grace started her first soccer league and Mommy started her first photography class! We've had illness for both kiddos this month, as well as an MRI and some scary episodes for little man. The kids saw snow for the first time and Mommy and Daddy got to unwind at the spa this month! 

I'm sort of glad for January to be over with our recent Caleb concerns but looking forward to new testing that will hopefully steer us in the right direction to alleviate some pain for him in February. 

Thank you for following along and for taking the time to learn about this life of ours, from the challenges we face raising two four year olds, through our questions for Grace growing up with a profoundly special needs brother, to the evolution of our hopes and dreams for our absolutely amazing and determined little Caleb. My mama heart worries about what's around each next turn, but by God's grace I know we'll make it all beautiful together. 

Snapshot

I'm not feeling into writing a whole post so here's a snapshot:

Grace scored FOUR goals at her soccer game today. She's been playing soccer in the backyard with daddy almost everyday after he gets home- he must be a great teacher! 

Caleb is now on Tylenol with Codeine and they gave us a steroid ointment to put on the inside of both cheeks (there are three small sores on the right and a giant one with a couple next to it on his left), and we're trying raw honey on it as well. He refuses to swallow his medicine. It makes me want to scream. 

Caleb had a massive meltdown at the doctors office today and I've realized that almost all medical professionals are beyond intimidated by our little man. 

Ben and I got a date night today that was very needed. I had a breakdown after spending all day trying to get stuff into Caleb's mouth and then somehow down his throat. I don't want to anymore. I just want to quit that part of mommying right now. :/

Here's the good stuff:

Tired

The roller coaster is exhausting. It always has been and I'm more and more confident that it will just continue to be this way. 

We were very close to taking Caleb to the hospital about five times today. I had help set up for the weekend and everything. He woke up acting off still. He was zoned out, drooling, shakey, and not eating. 

I called the Neuro, the nurse told me to take him to the ER, the doctor called back and said to take him to the pediatrician and have them call him. An hour later we were at the peds and they got to see the drooling and some of the strange behavior. He had a pretty obvious staring episode that I got on film at the doctors office while we were waiting to see them (of course not when they were in the room). They did another full check up and found nothing. They looked in his mouth as best as they could (he doesn't let people open his mouth easily) and didn't see anything and examined his throat for obstruction. 

They called the Neuro and discussed, and the Neuro said he wanted to admit Caleb in the hospital "sooner rather than later", but wanted to talk to another geneticist who specializes in metabolic disorders first. I had to call Ben to leave the office and pick up grace from school at that point because we thought we might be on the way to the hospital any minute. 

So we waited for that phone call and finally at 5:00 he called back to say he couldn't reach the geneticist and it was our call whether we took him to the ER. Then I called the pediatrician who said she'd wait one night and if he still wasn't eating, take him tomorrow. THEN I got a call back from the Neuro to say he finally heard from the geneticist who believes that there's something more going on with Caleb than the TRAPPC9 gene disorder and it sounds like a metabolic disorder. 

So, I decided we'd wait and if the acute issues of drooling and not eating continued, we'd take him to the ER tomorrow as those were the most concerning things immediately. The metabolic issues could be tested later when Caleb's doctors are actually rounding at the hospital. 

Then he didn't eat at dinner and it was so obvious that food was painful for him. I seriously considered just taking him right then because he looked so sad and was trying so hard to eat but just couldn't do it. We tried smoothie, apple sauce, cheese, bread, he couldn't handle any of it. It wasn't until I brushed his teeth that I pinpointed an area of his mouth that was obviously painful. His left side was really bothering him, so I got him up on the counter and forced him to open his mouth wide enough to show me that side and I was mortified. His entire cheek is a giant open wound! It looks so, so painful. He bites his cheeks accidentally often but a few days ago he bit it while eating dinner with his Hab provider and daddy, and he bled and cried. He must have bit a huge chunk off, or maybe bit it and continued to gnaw on it? We didn't think too much of it at the time because it's not rare for him to bite his cheek a bit. But now that I've seen what it looks like, I feel awful for him. It's almost the size of a quarter! Can you imagine, a huge canker sore that big??? 

So I'm taking him to the pediatrician again tomorrow to see if there's any option to help with that. I don't want to numb it for fear that he'll bite it worse. But the poor guy can't eat, or even close his mouth! 

Right now I'm feeling terrible but so, so glad that the drooling isn't a neurological symptom. There are scary things that cause sudden-onset drooling like that. I'm feeling much better about his acute well being. I'm still very concerned about the weird episodes of staring, jerking, and freezing- and we have lots of work ahead of us to find what's causing it all. We also have to keep him from destroying the inside of his mouth as well. 

But tonight, I'll hopefully get to rest a bit easier. 

Sleepy mommy!