Monday, May 22, 2017

Please Remain Calm

The hardest part of parenting for me, is being the least emotional person in chaos all the time. Some days I just want to yell "KNOCK THAT CRAP OFF!" instead of calmly looking my toddler in the eye and reminding him that his baby brother is not a stuffed animal and he can't be thrown or wrestled. Then another kid melts down into a puddle of emotions that really doesn't seem too far off of what I want to do after telling him for the fourth time that the glass window he keeps slamming blocks into is not made of concrete.

My kids are all pretty adorable little monsters. I don't have a problem loving them, laughing with them, snuggling them after they tumble... that warm fuzzy part of parenting is easy. But some days I feel like I'm fighting a losing battle to keep my less pleasant emotions in check.

Because as much as I love them - these kids can make me want to pull my hair out. Like when I am making breakfast and suddenly a full blown tantrum with tears erupts because I didn't let Vegas push the button on the coffee maker. Or when Little Man destroys a new toy by ripping it with his teeth because I left the room to pee. I hate that sinking feeling in my stomach when I hear the baby wake up 30 minutes into a nap that should have lasted two more hours... knowing now that I'm going to have to hold him for the rest of day or he'll lose his ever-loving mind. Which means that the other kids sense my helplessness and go crazy with their freedom from my watchful eyes. I can literally feel my jaw tightening up and my teeth clenching while I try to remind myself of all the wonderful and amazing things about having children. I really do try not to yell... but that is usually my go-to method. I'm definitely a "WHY ARE YOU DOING THIS RIGHT NOW!?" kind of Mom. And it definitely makes me feel like shit, knowing that the answer is usually "Because we are children and figuring our life out. Can you chill?" It's one of the things I am constantly working on as a parent - just taking that second to breathe and not lose it from exhaustion and exasperation and the loneliness of being the only person around that isn't insane.

This is the face of someone who wants to be held all damn day
I know I'm not alone in feeling frustration with kids, but I know how hard it is to be vocal about it. So here I am, being vocal. Sometimes being a stay-at-home mom is all wonderful amazing moments that you can't get enough of. And sometimes it's like having 100 Mondays back to back, Groundhog Day style. 

If you'll excuse me, I have to dump out my cold coffee before I rebuild a fallen train track that is making Vegas sob hysterically. Lets hope this is the only Monday I have this week.  Deep breaths.

Thursday, May 4, 2017

Epilepsy - A New Diagnosis for Little Man

Our mornings before school with Little Man are pretty easy now that we have a solution to the Bed Wars. We go downstairs and bring him up from his room around 7:15. He seats himself while we make him a breakfast of dry cereal, toast, and milk with Pediasure or yogurt in it for calories. At 7:58 I walk upstairs and grab him some clean socks from the laundry room, at 8:00 I brush his teeth, and we are outside waiting for the bus by 8:04. It's a simple routine and both Little Man and I love the ease of routine.

On this particular March morning it was business as usual. Hubs had brought Little Man upstairs that day because he was running late for work and I was savoring an extra ten minutes of sleep. Little Man was eating breakfast and I plodded downstairs half asleep to kiss Hubs as he walked out the door. We were talking about something and so he was going to be even more late and raced off at about 7:50.

At my usual 7:58 I glanced up at Little Man who was finishing up his toast and headed up for his socks. When I hit the bottom of the stairs at 8:00, I instantly saw something was different. Little Man's eyes were unfocused, he was staring off to the right of the room and looking at nothing. I went over to him and tried to turn his head to face me and a trail of drool came out of his mouth. As I kept repeating his name, his head wouldn't turn and suddenly his eye started twitching. I called Hubs immediately and told him I thought something was happening and to come home right now. I put him on speaker and kept yelling at Little Man to look at me, to focus, and then I just started sobbing. Hubs assured me everything was going to be fine but that he'd turn around and see if something was wrong.

When he walked in the door minutes later, Hubs took one look at Little Man and swept him out to the car. Little Man was able to be guided out the door but definitely wasn't walking well. They left for the hospital and I called my in-laws to come stay with the babies while I tried to pull myself together enough to make the drive, and I got to the hospital by 8:45.

I write these exact times because I don't know how else to explain how fast this all happened. One minute things were absolutely normal. The next minute my heart was in my throat and my world was upside down. I went through worst case scenarios in my head as I drove.

When I walked in to Little Man's room at the ER, I saw Hubs in the corner of the room and he had been crying. I think that's when I let myself start falling apart. Little Man was still seizing, because that's what we confirmed was happening - his first seizure since he was 2 days old. This smaller local hospital was doing everything they could to help him, but we could tell by the tense atmosphere in the room that we wouldn't be staying in this ER for long. Hubs and I held each other and cried. We held Little Man's hand and whispered to him that we were there, but his seizure had gotten stronger and he was completely unable to react to us. His eyes kept twitching and his jaw was clenched shut. Watching him got harder and harder the long we sat there, and the longer the seizure went on the less hope we had that things would be okay.

The doctors had placed a mask on him to help him breathe. They'd tried two doses of an anti-seizure medication and nothing was helping. At 9:30 they reached his neurosurgeon at Hopkins and they told us they would be taking Little Man to Baltimore by helicopter as soon as it could get there, and if his seizure wasn't under control by then we'd have to put in a breathing tube - an option that could cause further complications down the road and that he was hoping to avoid. Finally, Hopkins and the ER approved a final, different seizure drug before the helicopter arrived, and at 10:15 his seizure was over. It had been over two hours. I didn't know anyone could seize for two hours.

*Side Note - As I was watching my Little Man seizing on the hospital bed, I received an "emergency call" from Hopkins intake. I raced out to the phone at the nurses station assuming I needed to hear about what the next steps were before the helicopter arrived. Which was true - they wanted to validate my insurance and make sure we could afford the $400 co-pay for the helicopter ride, or they wouldn't be taking him. Again, this is while he was actively seizing and they could not get it under control. I don't think I've ever been more angry in my life.*

Shortly after his stabilization and my approval with the insurance company, Life Flight arrived. Originally we'd been told I'd fly up with him, but the helicopter had no space. We raced home and met the in-laws to let them know we had to drive up north, and to pack a bag. After our morning, we didn't think we'd be leaving Baltimore that night or even anytime soon.

But when we arrived in Baltimore a few hours later, our worst nightmare had turned into a relaxing afternoon at the hospital. Little Man was fast asleep, which the surgeons and neurologists said was very normal after such an intense seizure. His neurosurgery team recommended we do some testing to rule out a shunt issue, but neurology was fairly confident that with medication he could leave the hospital that evening. My Mama Bear defenses were still on high alert from the morning, so I insisted that he wouldn't be leaving the hospital until every test was done and any shunt issues completely ruled out. Luckily the surgery team was on our side, and agreed that a night of observation wasn't out of the question.

That night we had an EEG, which we hoped would show no further seizure activity and would also show us if this prolonged seizure caused further brain damage. Little Man was waking up a bit more from his seizure and so this was tougher than expected, but we got enough results to confirm two great things - no seizures were happening, and although there was some brain damage, it didn't appear to be new.

The next morning, we got the all clear to head home. We were given a choice of two anti-seizure medications for Little Man to be on for the next few months. One of them would require weekly blood tests to check for liver damage, the other had side effects that caused behavioral issues in children. We went with the latter, and he will be on that twice a day for the next few months at least.

We left Baltimore that morning with a few answers, and a few questions. Epilepsy brought on by the beginning of puberty was our official diagnosis. The seizures he had as an infant had a dormant phase and now he could be in for a period of many seizures, or never have one again. There isn't a way of knowing unless we take him off the medication again. We also don't know why the seizure was so long or if he'd been possibly having smaller, unnoticed seizures for a time. He used to have a habit of stopping an activity and staring blankly into space for a moment or two before continuing, and since he started his medication he no longer seems to do that.

For now, things are back to baseline. At 7:50 this morning he received one of his twice daily doses of medication, and by 8:04 he was at the bus stop. He's the most resilient kiddo I've ever known.

Tuesday, April 25, 2017

Welcome Back

Here I am! I'm alive! I'm back!

The silence was a combination of things. My old laptop crapped out on me, for one. And for two, my lawyer advised against writing for awhile while we dealt with some legal things.

Today I have a new laptop. And as of one week ago, I have no more legal things. So welcome back to our home!

If you need to catch up on the most basic details - here goes;

Hubs and I are celebrating 5 years of marriage in November. He's still amazing. He's still the most sane person in this house.

Little Man turns 9 in July *gulp*, which is not scaring me at all, not one little bit. We've had a couple health scares recently - a shunt surgery last September to move the shunt and unclog it, and our first very-big-very-scary seizure last month. The seizure lasted 2 hours before we were able to get it under control, and we spent an overnight in the hospital while trying to figure out what happened. Docs decided it was probably a result of the damage his brain suffered from his seizures as a baby, brought on by the beginning of puberty *gulp*. He's now on anti-seizure meds and has an official epilepsy diagnosis. Other than that, he's pretty much coasting along Little Man style. Nothing has really changed in his mental/social development, although he is working really hard at school to use an iPad for communication. He is officially a giant gangly boy!
Little Man shopping with me at Wegmans - I love the Caroline Carts!

Vegas turns 4 in August! It has been amazing watching him grow and change over the last year. Until a few months ago we were fairly positive he had apraxia of speech, a condition where he couldn't use his mouth muscles to form certain sounds. Now that diagnosis is a little more uncertain, because his speech has just exploded!! He started preschool in December unable to say any words, and now we can't stop him trying out new sounds and supplementing those with his sign language! He still takes speech therapy once a week because his words are very unclear and this jump in language is so sudden, but I have a feeling he'll be just fine in a year or so!! In addition to the preschool (which he loves) he goes to gymnastics once a week and his gross motor skills are also improving a ton. My cautious little toddler is starting to become a braver and stronger little boy. He's a total ham, and tests my patience every day. But dang he's cute...
Vegas saying "Cheeeeeese"

And finally - the baby! It's been so long since I've written, he doesn't even have a blog name! So introducing - Cheeseball! Cheeseball is going to be 2 years old in September. He is a snuggly, smiley, lovebug, and a definite Daddy's boy. He's got some serious shy-guy stranger anxiety going on which he's slooooowly outgrowing, but if Daddy is around he needs to be within eyeshot or it is a total meltdown. With all the focus on Little Man's health and Vegas' speech, we were slower to notice that Cheeseball's speech development is also behind. But by 18 months we realized it was time to get him into a Infants and Toddlers evaluation, which put him at about 11-12 months in speech skills. Nothing too major, especially with two strong and silent big brothers. So we start him in speech therapy this summer and hope for some progress by next year. We plan to start him in gymnastics too, because he's a huge daredevil - so much more curious and into climbing than his big brothers were, I know he will be my first kid to get stitches at this rate!
We don't call him "Cheeseball" for nuthin'
So there ya go! That's the quickest update I can jam into one easy-to-read post. I have a ton of other more detailed posts to write in the next few weeks. Some things I've been dying to put pen to paper about forever, and some others just to have to look back on for our family.

It's good to be back!

Thursday, January 8, 2015

The Course of True Love

Now that the mess of Christmas is behind us (or still on the kitchen table *cough*Hubs*cough*), we are working hard to get the house and the kids on a normal schedule again. 
Christmas Morning!
Both boys were spoiled rotten for Christmas - even though Vegas was not having anything to do with opening presents. His first gift was a stuffed tiger chair, and the shock of unwrapping his gift and seeing the tiger staring back at him was too much for him. Any time after that when someone would bring him a gift, he went running!
Nope. NOPE. Don't wanna touch this.
By the time Christmas Day ended both boys were in full on meltdowns and ready for bed. Luckily my in-laws live super close so bed was a quick drive away. Never underestimate the peace that comes of a daily schedule. Change is bad, change is bad!

Christmas Night!
Ignore my terrible posture, I was slightly distracted by the screams.
Also, yes, Little Man had an outfit change.
No it wasn't planned.
(Oh also, I got a haircut!)
After Christmas and New Years and a million events and parties, Hubs had to go back to work and I went back to house-management. We all have clean clothes again and the kitchen is a lot less crunchy when you walk. And my ear is constantly warm from being on the phone 24/7 with all of these doctors/therapists/VIPs.

Little Man's therapy schedule was the first big item on the agenda. He's still doing once a week home therapy, a full day at school, and every other week he has behavioral therapy. He finally bounced back from the plague that hit the house around Thanksgiving, and we're hoping that will help get him back on track with his other long term goals too. During the school day he is wearing cotton splints on his hands for certain activities to help him remember to keep his hands by his side (instead of on his ears). This is (understandably) very annoying for him and makes him very angry, so it's definitely not something we want to have to have him do forever.  He also discovered over vacation that because he'd been so good about not taking off his diaper at night, we'd stopped taping his waist and ankles. He has lost all the progress he made on the diaper department, and we are back to nightly duct tape. Unfortunately, he's taken to getting into it during the day too - hence the Christmas outfit change - and even been doing it at school. Ugh. 
Everyone is looking slightly to the left because that's where the Target photographer held the iPhone.
Can't win em all.
Merry Christmas.

Our other big news is that Vegas met with Infants and Toddlers over winter break and is now going to have his very own IFSP. We contacted them because he still has no words and doesn't really babble much. He went to his big test yesterday at Little Man's school, and passed... or I guess failed?... with flying colors. Speech therapy it is! He is at 7 months expressive language and 12 months receptive language, which means he has the 25% delay in development that qualifies him for therapy from the county. Other than his speech delay, he is on track everywhere else - I definitely have my hands full with this smart and curious little guy. But I have no problems with him being in speech therapy, and I'm not worried or freaking out about it (much). I know having a non-verbal sibling and being home with only me most of the time probably contributes to his delay, and so I think this will be very helpful. I'm not looking forward to squeezing in another therapist to the schedule, but we'll make it work. We've been down the Infants and Toddlers road before, and I have a lot of faith in the program and in early intervention. 
Vegas' First Day at Hogwarts.
Er... I mean preschool testing!

So don't take it personally if I seem frazzled in the next few months. It's because I am. Two kids in therapy, two shows at our local community theater, running a household, and possibly taking up a new 'job'. It's all going to be a caffeine-fueled blur. If you are one of those people that likes to help - I graciously accept k-cups and Mountain Dew.

Tuesday, December 9, 2014

No Easy Fixes

There are no easy fixes when it comes to Little Man. Going in to our appointment last Friday, I was pretty sure there would be tears - from me as well as Little Man. I woke up that morning and my bug had finally decided to hit me HARD. In the face. I walked around like a zombie while Hubs got everyone dressed and out the door, and managed to make me some breakfast for the road. I was miserable all day so I knew a stress-related breakdown at the appointment was inevitable. I am the kind of person who releases any emotion with tears, so I knew to stock the van with a box of soft and lotion-y tissues for the day.

Little Man started the appointment by having a serious tantrum that lasted a solid twenty minutes or so. Some head slapping and dramatic tears were eventually alleviated with three bags of fruit snacks and some therapy work. But the news was pretty much what I expected - we are on one wait list to see a psychiatrist for a med evaluation, and a second wait list for a two week long intensive outpatient program for behavioral modification. We are also restarting the every-other-week sessions with his psychologist. Even knowing it was coming, the serious look on his therapist's face brought me to tears. This therapist has seen Little Man since he was three years old, so he's seen Little Man at his best and at his lowest. This look said to me that this is the lowest we've been in those three years. And even typing that makes me tear up and my heart break.

I set aside all thoughts of therapy this weekend to just enjoy time with friends and Hubs. Even though we both were exhausted and still a little sick, I think we needed it. We spent Saturday night at a friend's Christmas party and Sunday night I went to brunch with more friends. Then yesterday I auditioned for another community theater production. Being busy is the only thing that keeps me sane. Sometimes I feel like the more I have on my plate, the more focused and happy I am. I mean, talk to me about that again in a few months, but yes - busy is good!

Speaking of busy, we have only a few days until I leave with two wiggly little boys and Hubs for a 16 hour road trip to Wisconsin. To save a crapton (yes, a unit of measurement) of money we decided on renting the smaller car versus the SUV. Cross your fingers and hearts for us, I'm hoping we make it in one piece. We are literally driving up, spending two days with family, and then driving back. We are insane.
Add caption
And because he didn't get mentioned much, here is a photo of Vegas being adorable. Also a reminder that I love this little squish, because seriously this grumpy mood he's been in for two days is no fun at all.

Wednesday, December 3, 2014

Life is Hitting Us Hard

As usual, the holidays came and we all caught some sort of horrible bug.  We've been out of commission for about a week now with various levels of sick, although Little Man has been miserable much longer than the rest of us. About a month now. We even ended up taking him to Urgent Care, because his cough started to get a horrible whooping sound for a few days. He was given steroids, cough syrup, and a diagnosis of croup. Yikes!

Luckily they said it wasn't very contagious, unless you shared food or drink immediately after him.

Two days later, Vegas was a snotty, sick little mess.

Oh little boys...


Because Little Man is sick and miserable, his behavior has been really out of whack lately too. His normal stimming and head-hitting has escalated to full blown punches to the left side of his head when he's angry. He leaves big red marks all down the side of his face, and screams bloody murder while he does it. I'm sure it hurts, which is a problem, but it is also really scary to watch. When he does the hitting in public I have to brace myself for not only his actions, but my own reaction as I sense people watching me to see what happens next. I never let the people-watchers dictate my own actions - Little Man is my child and I know when he needs to be redirected and pushed through an activity and when it's time to cut our losses and bail. But it stings to feel those eyes on you and your child, for sure.

I know there will be a time when Little Man is too big to pick up and hold, and too strong for me. I can feel it coming every time I lift him into his chair at dinnertime. So I worry all the time that this hitting phase will be permanent and that there will be a time where he will cause serious harm to himself or others, and that I won't be able to fix this. And of course right now it's too early to tell what will happen in a year, or five years, or ten. But I still worry. Because that's what mommas do best. Love and worry.

Right now, the hitting is only a problem when he is mad, and he only hits himself. So we're talking with his behavioral psychologist and trying to decide how best to handle things. I have a feeling that our psych trips will increase after we see him again this week and let him know our progress. Which is okay. We are okay.  And Little Man is okay.

Things had just been really smooth for awhile there, and so this feels like a huge setback. Behaviorally Little Man has developed leaps and bounds from where he was even just last year, but this just... its rough. Every once in awhile I just feel so overwhelmed with this one.

My Little Man being a lovebug at the doctor's office.
But this is also my Little Man. This cuddly little love-bug of a kid, who lately has been crawling into our laps at night when he gets tired, just to be held for awhile. The kid who never once hits his brother or is mean to him, despite how much Vegas is in his face all day long. The kid who loves to run his hands over beard stubble while he looks lovingly into your eyes.  This crazy, adorable little guy.

I love this little guy, and today I want to just look at this picture and remember how much he melts my heart even when it's been a long, hard, month.

Thursday, October 16, 2014

Back To Work

The title is slightly misleading I suppose. I'm not back to work in the traditional sense, but I am back to my workout routine!

If you have run into me recently, you probably have heard about how Hubs and I are in the early stages of planning for Baby #3. As early as July we had discussed when would be the ideal time to try again, and I'd pretty much put the lid on it until I could decide how I felt about things. When the topic came up again (and honestly, I bring it up much more than he does), I decided to set a goal and stick to it. I needed to lose the rest of my "baby weight" and feel like I was happy with my body again before we started trying.

Exercising does not come easy for me. I absolutely hate every minute of it. Some people love the endorphins or whatever, I can't stand being achy, sweaty, and straight up bored. The only way I've ever stuck with an exercise program is if it is something that doesn't feel like exercise, or if I have a clear and defined goal in mind. Case in point - I lost all my baby weight from Little Man in the months leading up to my wedding. I'd lost five or six pounds doing Wii Fit for awhile, and not working at a restaurant had helped. But nothing jump started me faster than realizing I was about to be front and center in a white dress with a corset that I bought a size too small.

So I am back again after lots of starting and stopping, and I'm working out harder than I have in a very long time. I'm taking just a half hour every day during Vegas' nap to kick some ass on the treadclimber. And the benefits of working out have started to pay off... not only have I lost seven pounds, I have gotten my energy levels back up during the day! I hadn't been getting as much done around the house, and suddenly my closets are cleaner, my kitchen sparkling (okay the floors are still kind of sticky but somehow they won't magically repel kid food!), and I'm preparing healthier and better meals.

I'm no fool. It is going to be a struggle to keep wanting to exercise daily as the weather gets colder and and I run out of decent stations on Pandora. But our anniversary is in a month, and that is when I will weigh in on my weigh-ins (hahahahahah I'm so punny). I want to love my body again, and be as healthy as I can be before I start the next chapter in our story.