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!
Thursday, June 29, 2017
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.
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.
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.
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Little Man at the dentist last week - no cavities, just bruises for Mommy as she held him in place for the teeth cleaning.
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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.
"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.
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