backround

Wednesday, September 20, 2017

Blogging Wednesday? Let's try it.

It's Wednesday, which I think I will designate as "Blog Day" from here on out to get back into a writing pattern. Wednesday is the morning I have the most free time, since Vegas and Little Man are both in school for full days and I don't usually have errands midweek.

Little Man is chugging along post-Botox injection. It was a quick and easy appointment, albeit long because the doctor is over two hours away. His PT says she's seen some minor improvements in his foot and ankle, but the muscle is still so tight that you can actually see the bone poking the skin up on the top of his foot. We're hoping to get in for a serial casting appointment sooner rather than later, and we also have Botox appointments every three months to keep the muscles from tensing up.

And in other exciting (erm, I guess?) news, we switched diaper brands for Little Man. We'd been sticking with the brand Medicaid used to provide him and they were... well, cheap. I mean, not cheap, cause adult diapers are not cheap. But cheapest and they seemed to do their job. Well after several months of wet mornings and shredded diapers we decided to try a new brand. I don't know why I'm shocked they're so drastically better, but I really didn't think an extra five to ten dollars an order would improve the quality so much. I don't think many of you are in a position where you are looking for adult diapers but if you are, I'd recommend Slimline Tranquility.

Vegas and Little Man are both in school now. Little Man could care less, Vegas is pumped. Most especially because he can ride the school bus two days a week. The days he has full days in his private school are my favorite (so much glorious free time!), and he loves them too, but really nothing compares to the wonderfulness that is a bus ride with his neighborhood best bud. And thank goodness for that kid, because otherwise I wouldn't have been able to get Vegas on the bus at all that first day of school! Now I'm lucky if I get a wave before he runs up to the driver and aide to say 'goo-mornin', how you today?!'

Cheeseball and I are adjusting to the quiet time at home. We have our living room completely gated off to keep the boys from running crazy when we don't want them to, but on the days its just us I try to let him roam free to discover what parts of my house need better childproofing. Spoiler alert, it's the Tupperware drawer and the toilet bowl. He's really into socks and shoes right now too so I am spending a lot of the morning helping him put them off and on again. He had a meeting with Infants and Toddlers last week about his speech development, and we got the great news that his speech has improved so much that he will probably not need therapy after this school year. He's going to be observed and monitored a few times until Christmas, but the OT was really impressed by his progress over the summer!

And as for me - I'm suddenly back in school too! I woke up the other day and couldn't let go of the idea of going back to school to relearn ASL and possibly get my interpreting certification. [dearest Hubs, so sorry I decided this at two am and woke you up for a serious discussion of this idea ;)] I know myself well enough to take it slow and not overcommit to a program I may not be as passionate about in six months time, so for right now I'm just starting with some basic classes. With my theater schedule and the kids I have to decide if this is something I want to make a priority - especially as it would become very expensive to commute to a school that would be able to help me achieve my ultimate goals. This semester will be a good way to decide what I want to do and what I can handle. Either way, I'm super excited about being back in a classroom again for the first time in... nine years!? Wow.

And that's as much update as I can squeeze in before I have to make lunches and get the kiddo down for a nap.

Monday, August 21, 2017

School Daze

Two weeks left until school starts. I'm waiting with baited breath... It's not just my kids that thrive on routine!!

Little Man will be in school full time. We haven't started the fight yet, but I am already predicting a tough year for him/us. His behavior has gotten really intense this summer. I use "intense" because he's not "bad", it's not a purposeful choice. He's just frustrated all the time and overreacts at the drop of a hat, and it manifests as huge blow-out tantrums for hours on hours. His hitting has gotten bad enough that he's managed to bruise himself a few times and now he's starting to lash out at his brothers if they get in his way. So once school is back in session I plan to call for an IEP to request not only the PT that they've taken away and he desperately needs again, but a behavioral therapist/ABA as well. If necessary, I want him bussed to a school that can provide more intensive help. It's been awhile since I've been this worried about him, and I think he's at a pretty critical point where if we don't get him help soon, he will fall into really bad patterns that I won't be able to break.

Vegas will be on a weird school schedule. 3 days a week of full day private school, 2 days a week of half-days at public school. He qualified for public school five days a week, but we decided he needed to stay his private school where he has made such huge improvements and is so comfortable. He's basically going to the local school for speech therapy and for specials like music and PE. He also got a waiver to go to the same school as Little Man, so they will ride the bus together two days a week! I'm probably going to explode from cute that first day.

And Cheeseball and I are staying home full time. Lots of quality one on one bonding and we're probably going to sign up for Mommy and Me gymnastics and swimming lessons. Cheeseball has so much energy and is very different developmentally than Vegas was at 2 years old. I think he'll really love the attention and the classes, he loves being a big kid and exploring so it will be right up his alley.

My favorite part of school starting again is that I plan to get more serious about taking care of my physical and mental health. More writing, more exercising, more meal-planning and cleaning (which actually is not work for me, I love it and it keeps my emotions more level). An organized home and healthy body is my ultimate dream. To get that started I signed up for a meal kit delivery service and some online subscriptions to keep the diapers and milk coming regularly. Plus I even splurged for a couple fun phone apps for exercise plans and good music. 

Just two more weeks. TWO WEEKS! For now... I have to go figure out how to lock the blinds to prevent the kids from looking directly into the sun.


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.