backround

Tuesday, August 1, 2017

I Know You're A Neurologist... But... HELP!

Last Wednesday Little Man finally had his follow up with his neurologist. We'd had to cancel the last one because Hubs went out of town for work and I was flying solo with the boys and no sitters, so we'd been waiting since mid March for this appointment.

The logistics of getting up to Hopkins is always a nightmare for us because we live so far away. It ends up being four hours round trip, not including the stop at the end for a Costco run. And as tedious as the drive is it really isn't the worst part. The worst part is getting Little Man to walk through the massive hospital when he won't keep his shoes on, has to stop and lean on you every few moments for a rest, and needs constant redirection to keep moving at his snail's pace. And if you've ever experienced a toddler cling, a giant nine-year-old cling is ten times as heavy and just as frustrating.

So I opted to bring the beach wagon, as a way to hopefully bypass the taking off the shoes and slow walking around. Definitely wasn't ideal, definitely wrenched my back dragging 65 pounds of stroller and kid. But it was better than not using anything. More on that later.

We met with neurology for his med check and all things brain. His doctor upped his medication levels despite no seizures recently because Little Man had a pretty big weight jump from the hospital stay. He also thinks that we will probably continue with the medication for at least two more years, if not for his lifetime. The risk of seizures with Little Man is now just too great. With his foot and muscle issues on my mind however, we ended up talking mostly about what our next steps were and if we could use Hopkins as our point of contact.


The neurologist was amazingly patient and walked me through way more than he is obligated to... and when he didn't have an answer he took the time to ask his boss to figure out more ideas. I freaking love residents. I've had plenty of bad experience with doctors, but residents rarely let me down.

So about that foot... we have to call our insurance company, find a specialty pharmacy that will ship the Botox to my house, and then I have to bring the Botox to a doctor who specializes in physical rehab. That doctor will do the injections, which should loosen the muscles enough to get an AFO or cast on the Little Man. Botox only lasts for 6-8 weeks, so we're probably looking at more than one set of injections, which is a four hour round trip to the doctor's each time. What a nightmare! But all of the doctors agree, Little Man is slowly losing the ability to walk, so it's a non-negotiable.

We also are getting a prescription for more physical therapy and a transport chair (aka, stroller for big kids) to help us cart Little Man around without using the wagon. PT is of course at Krieger in Baltimore again, so we're looking into a class I can take as a caregiver to be able to do the stretches and exercises at home. Hopefully I could learn a few exercises and talk about them with his school therapist as well, since they've backed off so much of the physical therapy in his IEP.

We've barely scratched the surface of what comes next for Little Man and I'm already an anxious, hive-covered mess. For someone who hates talking to people on the phone and who has major panic attacks doing highway drives, so far this is making the next few weeks look hellish.

Tuesday, July 18, 2017

Mommy's Role

I always figured the way I would raise my kids would be some kind of a cross between Kevin's mom from 'The Wonder Years' and Lucy Ricardo. Some sweet snuggles, home cooked meals, wise and loving lessons, and then a few ridiculous bursts of chaos and temper. Also I'd probably leave my kids with the neighbors a few times a week to chase my dreams of singing in a nightclub.

And I'd say with my little kids I'm pretty spot on. I can sit Vegas in time out with one hand and make pot roast with the other, expertly kiss a boo-boo and decide if it needs a band-aid or a silly song, and read Pete the Cat so many times it makes my eyes cross and my ears bleed. And yes, I definitely enjoy hanging out at my local community theater or with friends away from my kids for reasonable amounts of time.

But it's harder with Little Man. I don't always feel like I'm able to just mother him. I feel like I do a mediocre job of being his Mommy because I'm busy also being Doctor, or Therapist, or Advocate. I think I miss some of the sweet easy moments of his childhood because I'm too busy scheduling his next appointment or researching private schools and therapy. I feel disconnected from mothering as I grasp his chin in my hands and study his gaze while I administer a syringe of medication. Instead of assuming my kid wants to snuggle with me after school, I worry that he's coming over to me to bite or tantrum and hit. Basically it's more common for me to be worrying about what can and does go wrong than to be content and present with what is happening right now.

Just typing that makes me cry angry, guilty tears. I hear the admonishments in my head to "cherish the moments", but how can I when I'm thinking twenty steps ahead every day? Little Man's needs are becoming so overwhelming lately. His tantrums are bigger and angrier, his medical needs more urgent, and the gap between him and any kid his age is more pronounced than ever. I feel like Mommy has taken a backseat to all the other roles he needs from me recently. My love for him never changes, but the way I mother him... I just feel inadequate. I hold on to the hope that my actions and decisions are what is best for him. That he understands somehow that I'm still Mommy under the stress and worry and fear and other roles I take on for him. Definitely not the Mommy I thought I'd be for him, but hopefully the Mommy he needs.
Little Man and Mommy

Monday, July 17, 2017

Wet, Hot, Summer

Little Man's doctor has yet to call me back about his Botox appointment. Hopefully he gets back to us soon, because you can really see a huge decrease in his mobility lately. In all areas except removing his mother-ducking-pajama suit. After a good year and some change, he can now remove pajamas that we have zipped up backwards with the feet removed and sewn on again.
Cheeseball modeling his regular jams, Little Man in modified jams.
So every morning it is like waking up to that toilet monster from 'Dogma' in Little Man's room. I'd link a photo of that too but... nah, Google it, if you really need to see that mess. It's diaper off, gross stuff everywhere. For now he seems less inclined to touch any of it than he used to be - thankfully. But we're still having a bath and room scrub every morning again and it is exhausting. Next step is possibly finding a way to secure the zipper in the back so he can't pry it open and over his shoulders (I think that is how he's doing it)... either with tape or a fastener of some kind.

This summer has been pretty blissfully quiet the last few weeks as Little Man and Vegas both started camps. Of course they're in camps on opposite sides of town and random weekdays, but my in-laws have been amazing at helping with drop offs and pickups so it's been smooth sailing. It's also been a really good time to get household things done and relax with Cheeseball. Today is much less relaxing though, because I'm missing bulk grocery shopping and my workout to wait for someone to fix our air conditioner. It's a sticky 80 degrees in here now at 10:30 am, so we will be spending most of the day in front of the box fan and sipping ice waters. And then I will add to my heaping slice of mother-guilt by giving Cheeseball a dose of Tylenol for the low-grade fever (teething?) we didn't catch for a night because it's so hot in here. Call before you come over, we're living in our diapers and sports bras today.

Thursday, June 29, 2017

Walk It Out - Part 2

Little Man's orthopedic appointment was yesterday. We waited 2 hours for a 10 minute appointment, and I came close to walking out and heading home because I was so irritated. Luckily, Little Man was being an angel. And we'd already paid a $40 copay. Yeesh.

When the doctor finally came in and talked to us, it was a whirlwind of information in a short burst. After I explained his formal diagnosis (birth injury, hydrocephalus corrected, epilepsy, developmental delay), she seemed... skeptical? I don't know the correct way to describe her face. She asked to see Little Man's walk, and examined his foot. Immediately she noticed how tight his foot was and I mentioned his previous AFOs (leg braces) and how he'd outgrown them years ago but his gait hadn't gotten worse until recently.

Within seconds, she let us know that his muscles were now so tight he will probably require surgery to help flatten out his foot again. And even after surgery, he would be back in AFO's for awhile. Our only hope to prevent surgery would be to take him to another specialist who would inject him with Botox. This would hopefully relax the muscles enough to get him into casts or AFOs again. She wasn't sure it's a viable option for him because of how tight his muscles are now, but it is worth a shot. Either way, something has to be done or he will lose more and more mobility.

Then the doctor looked at me and told me I was doing a great job as a mom. And gently asked if I realized that what Little Man's dealing with is a form of cerebral palsy.

It's just another diagnosis. Another set of words. It didn't and doesn't change a thing. But it felt like I was punched in the gut. And so I cried for a minute and then she handed me some paperwork and hugged us both. 

Within minutes we were on our way to get Little Man a Happy Meal for being a trooper and making it the whole morning without throwing a tantrum. It looks like it's going to be another crazy ride towards what looks like some more big medical decisions. Phone calls start today!

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.

Well.

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.