Tuesday, June 20, 2017

Walk It Out - Little Man's Feet

Little Man had a very late IEP this year due to some scheduling issues - ours and the school's. He should've been evaluated and seen in March, but that's when he had his seizure, and after several back and forth calls we finally got in to see his team in late May.

Most of the IEP was fairly routine, but his physical therapist pulled me aside with some concerns. She only sees Little Man once a month because the county feels his progress with PT is maxed out (don't even get me started), but she works with his class regularly in swim therapy. She wanted to let me know she saw that he is having more and more trouble walking, and has some serious issues with balance and his feet.

I had to agree with her. We'd seen some issues ourselves, and now that he's been home on break we've seen even more. Circulation was my biggest worry because in the morning his one foot can look a little blue-ish and the muscles are clenched so tightly his toes curl under. We took him to the doctor for at the start of school and they didn't see anything alarming back in September. Things have definitely gotten worse since then though. His limp is more pronounced than ever, and he doesn't walk on the soles of his feet at all. He uses the inside of his left foot, curled under, and propels his right foot forward and walks on his toes. It's super hard to describe, I'll have to take a video of it at some point. But he's lost a lot of mobility and it makes walking distances extremely difficult now. And with Little Man being a tall and gangly nearly nine year old, he's outgrown any stroller we can buy commercially. We're looking at spending upwards of $400 on a stroller that would accommodate his size and weight for a good length of time. *Sigh* For now, if Little Man adventures with us we just move very slowly. Not ideal, but we take big trips so infrequently that we always seem to put that expense on the back burner and focus on his immediate and daily needs.
Little Man at the dentist last week - no cavities, just bruises for Mommy as she held him in place for the teeth cleaning.

But the stroller might not be something we can put off for too much longer, because his PT suggested that to correct the foot and gait issues we will need to go to an orthopedist for a full leg cast. We've tried orthotics with him in the past, and they haven't been successful, so she thinks this is the next step. I'm dreading the idea but we have an appointment next week with an orthopedist that specializes in special kids. If he's cast it would be about 4-6 weeks. And then he could need further casts depending on how he needs to be adjusted.

I'm trying not to get ahead of myself. But this could be a very intense summer for Little Man.

Monday, June 12, 2017

Raising A Slytherpuff

A few weeks ago I picked Vegas up from school and asked his teacher how his day went.

"Oh it was fine. He had a little issue with defiance during circle time. He's definitely figured out he's three!"

Oh he's three alright. Every morning we wake up and after we get dressed, he comes down and makes breakfast for the whole family. He can use the Keurig and make coffee, pushes the buttons on the microwave for my breakfast sandwich, and makes sure the baby gets his toast and bananas. He smiles at Cheeseball and says "goo mo Baybee! (good morning Baby!) and his most used phrase is "Bank you!" His favorite thing to do is smush his little body between Hubs and I as we're kissing hello or goodbye and steal a bunch of group hugs and kisses. His second favorite thing to do is to wrestle-hug Little Man until he's shoved off after a few minutes. It's so adorable it never fails to make me smile. He's got impeccable manners (thanks partly to "You're Welcome" from Moana, but I'll take full credit in public) and cleans up messes like a champ. He loves to giggle, dance, mimic, and cuddle and he's a general all around sweetheart. Combined with his love of delicious food and big belly laughes, I have pre-sorted him into the Hufflepuff house for sure. We'll have to see when his Hogwarts letter comes in a few years.


Unless I forget to let him push down the lever for the toaster. Or I butter his toast for him. Or convince him he needs to wear a shirt to go to school. And so on, and so on. Then he flips to Slytherin so fast your head spins. He has a stubborn streak a mile wide, not unlike his momma, and he has been known to look at me with a gleam in his eye as he takes a toy from Cheeseball and holds it above his head while the baby screams. He can fake cry and he also can loudly scream "NO I DO IT!!!" We can have nights where time out lasts off and on for hours, the minute he gets out he winds up again for another crazy tantrum or pushing his brothers around. Sometimes when I pick him up from school, he hides on the playground until his teachers and I can corral him, and then he sulks the entire way to the car and does the dead man's drop until I'm sweating, frustrated, dragging him in one arm and Cheeseball on my hip in the gentlest way you can drag an angry toddler. Insert eye roll here.

He's my Slytherpuff. My kid with a huge heart and even bigger personality. Maybe he's a typical three year old, but I have a feeling he's it's going to be a wild adventure with this kiddo... and I can't wait.

Most of the time.

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.
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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.