"Hi there, so sorry I missed your call last week - this is Little Man's mom calling to reschedule his PT appointment?"
"Yes hi - we have him listed for this Friday at 2, is that okay?"
"Well no, we have an appointment this week but the following Friday would be fine."
"Okay well, do Fridays at 2 normally work for you? We need a consistent appointment time and you need to keep them so progress can be made with Little Man."
"... Yes, Fridays normally work fine."
"Um... so then yes, why did you say you needed to return my call?"
"Because you canceled our appointment last Friday."
Seriously. Eff the eff off. If I cancel or reschedule an appointment before the required 48 hours, keep your nose out of my business. And if I didn't give you notice, charge my credit card and feel free to inform me that you did. All of that can be done without the side of guilt. I usually overshare and explain to you that he's come down with a bug or that something came up with one of my other kids that needs to be addressed, but even if I didn't... Your office policy is that I call, I called, I didn't ask for your opinion on my child's medical situation Office Manager Judy Snoopy*.
Even though I know Judy is full of crap, it still stings to hear some stranger decide you aren't doing enough. Judy doesn't know that this PT is a placeholder until his Botox loosens up his foot more, that I'm paying a co-pay for a therapist to look at my son's foot and tell me there isn't anything more she can do without hurting him. A co-pay and visit that I have to be careful to space out because insurance grants us 75 visits a year and we will need to use multiple times weekly after his casting and/or surgery much more than we will now. Judy also doesn't know that I have two other children who can be in various levels of need or crisis that I have to consider. Or that I have to be home to receive delivery for a new fridge now that our old one bit the dust. She just wants to impart her glorious wisdom to me because apparently I can't possibly understand that I need to seek medical care for my child?
It is impressive how with one sentence I can feel pissed off, guilty, and anxious all at once.
I hate Judy Snoopy.
*Name changed, obviously. Who would name their kid Judy Snoopy?
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Wednesday, September 27, 2017
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.
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.
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.
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.
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!
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.
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.
Tuesday, October 14, 2014
"It's Probably Not Cancer" and how we switched pediatricians
Before Vegas was born, we knew that having a good local pediatrician would be crucial. We couldn't use Little Man's - she was not only over two hours away, she also had terrible availability. So we toured an office on the recommendation of friends and absolutely loved it. It wasn't perfect, this ped was still a half hour's drive from us. But we figured it would all work out in the end and we were fairly used to driving to any appointment so it was decided - New Ped would see Vegas and eventually we'd transfer Little Man there as well.
We begged, we pleaded, we repeated the assurances we'd received only a couple of weeks prior. But the receptionist wasrude as hell firm - no visits were available.
Flash forward to the day we arrive home from the hospital... New Ped didn't have privileges at our hospital so we called to set up the newborn visit for sometime in the next few days. I was very anxious to get the all-clear on Vegas despite all the assurances he was practically perfect in every way, and New Ped had promised to see him herself ASAP.
"We're sorry, we don't have any availability for at least three weeks."
Three weeks? But this was the newborn check! He would be practically ancient by then! And if there was a brain bleed, it would go undetected for three weeks? Hell no.
We begged, we pleaded, we repeated the assurances we'd received only a couple of weeks prior. But the receptionist was
So we called another pediatrician, this one was between Hubs' office and the house, an ideal location but we'd never met them. He could see Vegas the next day for his newborn check. We were sold.
New New Pediatrician's office was a little more ancient classic. It was in a bigger building with a lot of other doctors, and these pediatricians had been practicing for a lot longer than New Ped. This didn't really bother me much, most of his wisdom was the kind of stuff I'd grown up hearing at my own doctor's visits, and I could relate. He was a friendly doctor, great with Vegas, and he said it would be fine to switch Little Man to him as well.
After we brought in Little Man though, he quickly realized that he was not equipped to handle a kid with disabilities this intense. Although he did say we could continue with his practice, his actions suggested he was uncomfortable with the situation. He refused to even give Little Man a flu shot because he was unsure of the protocol for kids with shunts. We decided after that visit that Little Man would continue with a New New New Pediatrician, and we'd keep Vegas with New New Ped. Still following? Good. You're doing better than I thought you would!
Back to Vegas' story - New New Ped was now very cautious with Vegas' health after seeing his big brother. Within his first few weeks, we'd already been directed to a see a specialist about Vegas' feet (slightly bowed from his position in the womb), and another specialist about his pretty intense baby acne. A few months after that, we were told that Vegas' head was above average sized and he would need to be brought in for extra appointments, our heads needed to be measured and averaged, and then we'd possibly see a third specialist at Children's Hospital. A couple months later and we were finally told that he just has a big head - but now his "slow development" was concerning. Vegas was already 9 months old and not playing patty-cake.
I think that day was when I finally realized this pediatrician - despite his good nature and great location - was not going to work out. I knew there was nothing wrong with my littlest. He didn't play patty-cake because I don't play patty-cake with him. No, he didn't stand already - but he was slower to walk and so I wasn't worried in the slightest. Until New New Ped told me to worry that is. I didn't have any options for a new ped that I liked and trusted in the area though, so we just stayed with New New Ped because it was convenient. I figured if I found someone we'd eventually switch, but I was not in a big hurry.
With birthdays and vacations keeping us busy all summer, Vegas was late for his 1 year checkup. We went in and he needed his four vaccinations and a blood test for iron levels. The nurse suggested we do the blood test first, and it would be a quick finger prick.
The finger prick took forever, he was slow to start bleeding and it felt like that vial couldn't fill up fast enough. He was hysterically crying and it was breaking my heart to hold him down. Eventually she'd gotten enough blood and she gave him a bandaid and left the room to drop off the vial.
Suddenly Vegas' finger started to bleed for real - all down his arm, the table, and the floor. He was struggling and screaming and I couldn't keep a grip on him on the exam table. I screamed for someone to help me and no one came, even though I had seen a group of nurses hanging out just outside the door. After what felt like an eternity but was probably only a minute or two, the nurse came back and helped me calm him down and bandaged him back up. But I was totally thrown, and the shots that followed didn't do anything to calm me down.
We got home and I called Hubs to let him know he was in charge for the next blood draw, and I that I hated the nurses. Even then I was still not "done" with New New Ped, but we were definitely going to be looking for a new doctor sooner rather than later. I was angry, but not angry enough.
That is, I wasn't angry enough until the next day. Hubs called me while I was at a class and told me that New New Ped called him at home around 5 pm. He had gotten the results of Vegas' blood draw and he'd "never seen anything like it before", it was extremely abnormal. He wanted Vegas' in for a redraw in a week, because even his colleagues were confused by these results.
He did want to assure us that it was "probably not cancer though". This was an issue with red blood cells, so yeah, he didn't think it was cancer. But it was definitely urgent, and we needed to be in soon.
That is when I went from angry, to Mama Bear furious. Calling a family at home as they sit down to dinner to inform them of this kind of news? News that you probably had all day, that you waited til end of business day to call to talk about? News that is "urgent", but we will wait a week to see what happens?! And where in the WORLD did the "c" word come from?! I am no medical doctor, but even I know that an abnormal red blood cell count doesn't bring cancer to the front of the pack of medical issues you're having, and you're talking to the very frightened family of a one year old!?!? OVER THE PHONE?!
By the next morning we'd switched Vegas to New New New Ped, the lovely but not local doctor we'd found for Little Man. Between 8 am and 11 am, they'd called New New Ped, gotten the lab results, gotten Vegas' records released, reread the lab results, and confirmed with me that they felt it was a faulty test and human error - not a horrible blood problem. Possibly anemia. They wanted to do a retest to confirm that, because they didn't trust this test at all, but it was nothing to panic over. And that was that.
I wish we'd started seeing a new doctor sooner. I should have trusted my gut and switched the minute I realized that this guy was not a good fit for our family. Lesson learned the hard way.
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| Little Man and Vegas, healthy and probably cancer free. Seriously, eff that doctor. |
Friday, July 18, 2014
Someone Said The Magic Words!
Parenthood 102: A Lesson In Humility. When things are going smoothly, you can count on disaster striking quickly to put you in your place. It doesn't have to be an epic disaster, or even anything you can't bounce back from in a couple hours or days - but it always arrives right after that secret little thought you have. You know the one. "Everything is going so well right now..." Even if you're smart enough to not say the words out loud, just thinking them is a challenge to the powers that be, and they don't take kindly to challenges...
It started slow. I thought the words and then suddenly Vegas was waking up more during the night. Nothing we couldn't handle, and his wake ups are normally of the put-the-binky-back-in-and-lay-him-back-down variety. But then the wakeups segued into harder-to-put-to-sleeps, nap-skipping, and a couple wake-up-screaming-until-you-rock-or-feed-me-back-to-sleeps. We've attributed it to teething, since the poor kid is drooling worse than a St. Bernard right now, and four teeth seem to be poking through on top. Again, nothing major, but a little more exhausting than normal. I thought the words again.
Then yesterday the little patches of eczema on Vegas' feet started morphing into little red blisters. We had a follow-up appointment to measure his head circumference again that morning (he still has a large head), and while he was cleared for that particular issue (whew!), the blisters had his ped worried. He wanted us to see a dermatologist "sooner rather than later", and so we squeezed in a time slot the next morning. That of course meant that we had to split up, with Hubs taking Little Man to his therapy up north two hours away, and I would take Vegas to the dermatologist. Stressful, again, but we've got this. Right? I thought the words again, albeit a little less confidently.
I noticed as I was driving home from the checkup that my ear was starting to ache. The closer I got to home the more it felt like a giant needle stabbing me. I got Vegas inside and waited for Hubs and Little Man to get home from camp and downed a glass of water and one of the giant ibuprofen left over from pregnancy recovery. The pain seemed to dull a little so we decided to go ahead with our dinner plans and popped over to our friend's house for the night.
As one of our friends put it - "Hanging out with friends changes so much as we get older." There was the usual wine and pizza we've loved for the last ten years, but really the evening was filled with relaxing and playing with all the kids. Little Man was in rare form and managed to spill applesauce and red wine on two separate friends, and steal an unattended slice of pizza from a third - all while in complete control of the television. No one seemed too mad, but it was one of those parenting moments where I just wanted to face-palm and hide. Luckily Vegas was his usual serious but cuddly self, and so I used him as a distraction. My ear started to hurt again though so I popped a few extra strength aspirin and drank half a bottle of wine. Self-medicating works, don't let anyone tell you otherwise. I dimly thought the words for the last time as I dozed a little on the way home, with my kids sleeping peacefully in the back of my newish van.
We got home around 11 and tossed the kids in bed before passing out. At 3:30 AM, my ear pain woke me up from a deep sleep. After tossing back another ibuprofen, I realized quickly that this ear pain was going from bad to absolutely intolerable, and we called my mother-in-law over to watch the kids so I could go to the ER. Yep, it was that kind of bad.
Got checked in and out in a flash, they couldn't see anything wrong with my ear but I got an antibiotic and a prescription for (surprise!) ibuprofen. Also an appointment to see an ENT on Monday, enjoy the weekend! Before I left they offered me a stronger painkiller for the road, so Hubs decided to cancel the Little Man's appointment so I could take that and pass out for the day while he took care of Vegas' derm appointment. Can I get an amen for an amazing husband?
Vegas' appointment, as relayed from the Hubs, wasn't too scary. They took a culture of his ankle rash and threw around a couple ideas for what it could be - but no diagnosis yet. He has to take bleach baths once a day and has a prescription lotion for now, and a followup appointment in a week. She did mention that he will probably have a chronic skin condition with flareups for the foreseeable future, since he's had the eczema for so long. Sigh. Keep us in your prayers that the culture comes back boring and quickly curable!
And to round it all out, Little Man has had an upset stomach all day, my ear still hurts despite the medicine (although not ER worthy pain) and now there is some neck and shoulder pain involved, and next week Hubs is out of town again while all the followups and appointments and summer camp are still happening!
Repeat after me: I will never even think the phrase "Everything is going so well right now", ever again.
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| Next class? Parenting 103: Why Do My Children Sleep Best In A Carseat As We Pull Into The Driveway? |
Monday, May 19, 2014
Just Being "Normal"
I am nervous to write the words down - but things are going suspiciously great right now.
Well enough that I feel good writing about it without worrying I'll jinx it somehow. Little Man comes home from school every day nice and exhausted and ready to relax with us. We've gotten into a great routine where he walks over to the dinner table when he gets hungry and we sit down to dinner together. He goes to bed by 9:30 and stays in his room semi-quietly until we get up together for a bath before school at 7:30 in the morning. We've manufactured a new duct-tape belt and anklet set that prevents diaper removal that has been working for over a month. He's progressed in his usage of the iPad to make some choices with food or television. He's been more affectionate and open with us and his extended family.
The only thing out of the norm we've done recently has been a "quick" (Hahah- with travel it was a 6 hour day) appointment for a baseline MRI for Little Man. His neurosurgeon assured me that Little Man wouldn't need sedation for the procedure, and I assured him that if he thought he'd get Little Man sitting still for ten minutes that he was batshit crazy. We were both wrong I guess, because Little Man did manage to get his MRI done without sedation, he just needed Hubs laying across his chest in the machine with him. Which sounds like it would be really stressful and scary, and maybe it was - but Hubs took it like a champ and said it "wasn't that bad". He did admit that stuffing two people in an MRI machine, one of those people wiggling and screaming bloody murder, was possibly a little claustrophobic. Still, better than we expected for sure.
After the MRI was an appointment with his surgeon turn back on the shunt. I didn't realize that they technically don't turn it off before the MRI starts, they just adjust it afterwards since the machine changes the magnetic setting of his shunt. The appointment was quick and easy, although when the doctor read the MRI he said that Little Man's baseline still shows more fluid than normal around his brain. Basically his new MRI looked very similar to the one he had during his shunt failure in 2011, which was a little disconcerting to me. The doctor didn't seem overly concerned but he did tell us that if the shunt failed again there would be no real way to tell unless Little Man displayed symptoms (ie; another year of nightly vomiting episodes). Of course, that morning before the MRI we'd noticed Little Man's breath was a little gross, and he spent the weekend afterwards being sick and pukey, so we're on high alert wondering if everything is okay with his shunt. But he went to school today and seems to be on the upswing, so I think it might have just been a bug. *Crossing fingers*
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| LIFE IS GOOD! |
Well enough that I feel good writing about it without worrying I'll jinx it somehow. Little Man comes home from school every day nice and exhausted and ready to relax with us. We've gotten into a great routine where he walks over to the dinner table when he gets hungry and we sit down to dinner together. He goes to bed by 9:30 and stays in his room semi-quietly until we get up together for a bath before school at 7:30 in the morning. We've manufactured a new duct-tape belt and anklet set that prevents diaper removal that has been working for over a month. He's progressed in his usage of the iPad to make some choices with food or television. He's been more affectionate and open with us and his extended family.
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| Super fancy duct tape system. And serious bed-head. |
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| My big kid, looking little for a moment. |
Doesn't that sound like life is totally normal and great? I guess maybe my baseline for what is normal might also be a little skewed. But the MRI was genuinely nothing but an expensive and fancy checkup, because things are going *deep breath and holding* really well.
Not to be left out, Baby Vegas is also doing fabulous. He's been eating two or three meals of puree a day now, and loves him some puffs and rice crackers. He doesn't crawl anywhere, he usually scoots on his butt until he reaches whatever he wants - which lately is the laptop cord or the television remote. During the time Little Man is at school we watch our two favorite shows, The Daily Show and Colbert Report, and then turn off the tv for a long morning nap. After we wake up we just hang out and play quietly together all day long. His face just lights up whenever he sees his Daddy come home from work or hears him on the phone, and he definitely has him wrapped around his chubby little finger. He rarely cries or fusses, and I only know he's teething because he has had the worst runny nose for the last few weeks. Oh and the two teeth that have shown up! He sleeps through the night from 9:30 to 7:30, every so often having a night where he wakes up and fusses for his pacifier to be put back in. It has been a marvelously normal and average babyhood so far for this little guy, and I'm loving every minute of it. I love being home with him, watching him grow and learn. I love being the Mommy to two amazing little boys.
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| Shopping, everyone does it. |
Yes - Life is (our) normal. We're doing great. I'm trying to enjoy this time without worrying that the other shoe is going to drop and things will go back to crazy. But if you'll excuse me, I have no time to worry right now, it's naptime over here!
Monday, September 9, 2013
The Grand Finale: Baby Vegas' Birth Story
Baby Vegas has arrived! Right now I'm enjoying a cool glass of water while Vegas is laying across my lap in a milk-induced coma. He has a poopy diaper, but I am forgoing changing it so I can update you guys. I am so generous right? Maybe by the time I'm finished, Hubs will show up and change it for me!
I'm so excited to share Baby Vegas' birth story - he has completely changed the way I feel about laboring and delivery. The weeks leading up to his birth were so filled with anxiety and fear, the nights I had contractions would have me flashing back to Little Man's birth and being terrified of what was going to happen next. After his birth I finally understand why women don't mind having more than one child... hahaha.
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So it all started on August 17th - Baby Vegas' due date!! Despite all my efforts and insistence that he might come early, nothing really happened til 9 AM on that Saturday. I woke up feeling kind of "off" and having very mild contractions. They stayed 10 or so minutes apart all morning and so I just enjoyed some trashy tv and relaxed in bed. Hubs brought me breakfast in bed and I warned him that I was absolutely going to force out this baby today. We called my mother-in-law over to watch Little Man at about 1:30 and my contractions were 7 minutes apart by then, so we sat around and chatted for a bit until we decided there was nothing much better to do than go to the hospital, ya know - just in case. We figured they'd either check me and send me home, or maybe I'd be SUPER DILATED and just pop out a kidlet. I was hoping for the latter but betting on the former.
Of course, I demanded we stop at WaWa for one last Slurpee just in case. Oh, and we took the final belly shot photo, right on time!
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| 40 Weeks and my dry-erase marker kicks the bucket. Obviously time to give birth!! |
So we got to the hospital at 3:00 and plodded over to L&D. When she checked me out, I was only at 1 cm dilated (out of the necessary 10 cm, for the non-baby obsessed folk), but contractions were 5 minutes apart, and so I was told I needed to walk around the hall in the hopes that I would at least dilate to a 3 or 4 and be in active labor. They gave me an hour and disappeared. So Hubs and I walked. And walked. And walked. L&D is a small area, so it got old pretty fast. I debated getting into the whirlpool tub thing but the room was small and creepy. Plus my contractions were starting to get a little more intense than they had been at home. There was not another soul in the ward though, so it was a peaceful and quiet afternoon.
After an hour they came in to check me again and I was only dilated to 2 cm. Dammit. But my contractions were strong and still 5 minutes apart. At this point I told the nurse I had no interest in going home and that I wanted to be admitted. (I know, ballsy right?!) I told her that the contractions hurt enough that if I were at home, this is the point at which I'd be leaving to come back to the hospital to be checked again - so there was no point in leaving and coming back in an hour. Luckily when she talked to my doctor they decided I could stay, but warned me that it would be a long boring night for me. Whatever, I was going to have a baby!!! So at 5 PM I text all the family and friends to alert them that I was IN LABOR getting admitted! Then I sent Hubs to go get me some tacos before the doctor put me on an all liquid diet. This would prove to be a terrible idea later, but was delicious at the time. Hubs was also terrified I'd give birth somehow while he was gone (a 20 minute trip in total), which had me cracking up. Little Man's birth took 29 hours from when I was admitted to actually having him in my arms, so I wasn't really anticipating a rapid birth.
After our quick dinner, the contractions had picked up to the point where I was no longer enjoying them (you know, as a sign of impending baby) or able to shrug them off. So they offered me stadol through my IV to take the edge off the pain. I was eager for a little relief, but instead the stadol just made me feel insane. I was giggling and crying in laughter, but then my thoughts were very fuzzy and disjointed. I couldn't speak very well and then to top it all off - it didn't really do much for the pain at all. Mostly what I remember of the stadol experience was how much I hated every minute of being on it. I kept asking Hubs to remind me never to take it again. Repeatedly. And I begged the nurse to flush it out of me somehow. She seemed skeptical of my intense dislike of the drug and tried to get me to "accept the feelings and not fight them" - but I couldn't ever get past that awful floaty and out-of-control feeling.
So then at around 7:30 PM they offered me an epidural. Through the stadol haze I was in I tried to explain that I didn't want to get the epidural too early and slow down my labor. I'm sure my slow speech and desperate attempts to keep eye contact despite the crazy feelings I was having really helped get my point across. Anyways, the nurse assured me that an epidural would not slow me down, and besides - if I was planning to get one anyways, why not now? No need to be in pain if I didn't have to be! I was skeptical of her logic, having educated myself extensively through other people's birth stories and WebMD. But against my better judgement I told her to go ahead and call the anesthesiologist and let them know to come up "whenever".
All of a sudden during my next contraction I felt - and I swear I heard - a pop like a balloon bursting. My water had broken (7:56 PM) and it took me completely by surprise. With Little Man my water had slowly leaked for hours, but this time it happened all at once and felt so strange. With the next contraction it felt like I got hit by a hammer. They were coming harder and harder and I was gripping the rails of the bed each time trying to breathe through them. It took another half hour for the anesthesiologist to show up and by then I was thanking my lucky stars that I hadn't waited like I thought I should...
Hubs held me and supported me through another contraction while I got the epidural. The first attempt only took on my right side, so the anesthesiologist did some adjustments and then I had absolutely no feeling in my right leg and was numb in my left. A couple bad contractions later and I was in heaven - I couldn't feel any pain at all. Score! I sat back and began to relax and then my family started showing up - my mother and sister arrived first, and then my mother-in-law. They were all going to stay in the room during delivery, and then my best friend K and her boyfriend were going to be there in the waiting room (there was a limit on how many could be in the delivery room). At some point, I started to feel very nauseous, and got some anti-nausea medication through my IV when my nurse noticed I looked a little green around the gills. She scolded me a little for not talking to her about how I was feeling, because I'd been silently suffering through the nausea for over an hour. That's when I finally started falling in love with my nurse - I seriously could not have made it through labor without her support.
Around 10:30 the nurse came in to check me since I'd had the epidural for two hours. I was so busy chatting and enjoying time with the family I had dilated to 10 cm without even realizing it! The nurse then suggested I was ready to push - but I didn't feel any pressure like I had with Little Man and didn't feel "ready". So she just shrugged and told me she'd come back when I felt like pushing. I remember sitting there feeling kind of shell-shocked - I just couldn't believe that any minute now I could be a mother of two and yet was still feeling pretty great!
At 11 PM I decided it was time to try pushing, even though I felt no pain and very minimal pressure. I called the nurse into the room and we did two practice pushes along with my doctor (who I want to note, was the ONLY doctor in my 4 doctor practice that I hadn't met and was so nervous about going through labor with.) After the two painless pushes, both of them told me the baby was still very far up in the birth canal and it would be a long hard road of pushing if I kept at it. Instead, they suggested I just wait around and see if he floated downstream a little before pushing. I was all for putting off what I suspected would be a lot of pain, so they left and told me they'd come back in an hour or so.
At 11:30 I knew it was my last chance to try and convince Baby Vegas to be born on his due date. Doctor G and the nurse came back in and we did two more pushes together before they informed me it was still a long road down the birth canal for Baby Vegas. Sigh. Off they went!
Then I just chatted for awhile with the family, dozed off a little here and there, and waited for Baby Vegas to get his bags together and start heading out. His due date passed us by, and at one am the next morning I was finally feeling enough pressure that it seemed time to push!!
So the doctor and nurse came back in, and we started pushing. My pushes were only effective about half the time, but they never made me feel like I was "failing" or being difficult - which was another huge difference from my previous labor experience. The whole time the doctor just encouraged me through contractions but never tried to rush me through the process. My amazing nurse kept assuring me I was doing great and offering me anything I needed. Hubs stayed at my left leg the entire time holding me and telling me he loved me (even when the nurse offered him a chair and I assured her he definitely did not need a break if I was not getting one!) My right leg was alternately held by a nurse-in-training, my mom, and my little sister.
Eventually my nausea came back and I puked up those formerly delicious tacos. Ick. But then I felt 100% better and was able to focus a little more on my pushes. Unfortunately after an hour and a half of pushing I still hadn't made much progress. I started getting worried then that my doctor would try to push me towards a c-section, which terrified me. After every push I insisted there would be no need for a c-section, and bless that doctor's heart she just smiled and said that as long as the baby and I were doing well that there was no rush. And THAT is when I fell in love with my doctor.
Eventually my little guy started having tiny dips in his heart rate, and the nurse let me know that the cord might be wrapped around his neck. That was the only moment where Hubs and I looked at each other with a little fear, but then she reassured me that everything would be alright and that the doctor would make sure he was okay. At that point I joked to the doctor and nurses that every time they gave me an update on the baby they needed to end the sentence with "but everything is fine". So they started doing that and it really helped out with a lot of my anxiety.
Finally at 3:15 AM the nurse suggested that we do a "tug-of-war" technique to help make my pushes more focused and effective. She held one end of a bedsheet while I held a knot on the other end, then during my contractions I would tug on the knot as I pushed. All of a sudden my pushes were moving him out - everyone started rushing around getting ready to welcome my little one into the world! At 3:49 AM Baby Vegas finally arrived as my Hubs and my sister were both by my side. The doctor immediately put him on my chest because we had decided to do delayed cord clamping (which means we waited until the umbilical cord stopped pulsing before cutting it) which was great because after that it was awhile before I got to hold him again. Hubs bravely cut the cord, and then they took our little guy off to get cleaned up while I got repaired down below. (All I will say about that is, that I fared much better than I did with my first birth.)
Baby Vegas was 8 lbs, 2 oz, and a shocking 22 inches long! They had told us at his ultrasound that he was going to have hair - but holy moly, did he come out with hair!!! We had our doctors and nurses check and double check everything about him, and he was 100% healthy and typical. That amazing nurse stayed next to me for awhile while I urged the Hubs and family to stay with the baby, and she just kept assuring me of how wonderful and perfect he was in my ear, and it took everything I had not to dissolve into great big sobs. I couldn't believe I had made this perfect little boy, that everything was going to be okay, that there was no great big hammer about to drop out from the sky and crush us.
And that folks, is how babies are born. Or at least, this one baby, who has already become one of the most precious gifts I've ever received. Which is why it has taken me three weeks to finish writing this post, because he has thrown us all into a whirlwind of falling in love with him, and being parents to two amazing little boys.
All of a sudden during my next contraction I felt - and I swear I heard - a pop like a balloon bursting. My water had broken (7:56 PM) and it took me completely by surprise. With Little Man my water had slowly leaked for hours, but this time it happened all at once and felt so strange. With the next contraction it felt like I got hit by a hammer. They were coming harder and harder and I was gripping the rails of the bed each time trying to breathe through them. It took another half hour for the anesthesiologist to show up and by then I was thanking my lucky stars that I hadn't waited like I thought I should...
Hubs held me and supported me through another contraction while I got the epidural. The first attempt only took on my right side, so the anesthesiologist did some adjustments and then I had absolutely no feeling in my right leg and was numb in my left. A couple bad contractions later and I was in heaven - I couldn't feel any pain at all. Score! I sat back and began to relax and then my family started showing up - my mother and sister arrived first, and then my mother-in-law. They were all going to stay in the room during delivery, and then my best friend K and her boyfriend were going to be there in the waiting room (there was a limit on how many could be in the delivery room). At some point, I started to feel very nauseous, and got some anti-nausea medication through my IV when my nurse noticed I looked a little green around the gills. She scolded me a little for not talking to her about how I was feeling, because I'd been silently suffering through the nausea for over an hour. That's when I finally started falling in love with my nurse - I seriously could not have made it through labor without her support.
Around 10:30 the nurse came in to check me since I'd had the epidural for two hours. I was so busy chatting and enjoying time with the family I had dilated to 10 cm without even realizing it! The nurse then suggested I was ready to push - but I didn't feel any pressure like I had with Little Man and didn't feel "ready". So she just shrugged and told me she'd come back when I felt like pushing. I remember sitting there feeling kind of shell-shocked - I just couldn't believe that any minute now I could be a mother of two and yet was still feeling pretty great!
At 11 PM I decided it was time to try pushing, even though I felt no pain and very minimal pressure. I called the nurse into the room and we did two practice pushes along with my doctor (who I want to note, was the ONLY doctor in my 4 doctor practice that I hadn't met and was so nervous about going through labor with.) After the two painless pushes, both of them told me the baby was still very far up in the birth canal and it would be a long hard road of pushing if I kept at it. Instead, they suggested I just wait around and see if he floated downstream a little before pushing. I was all for putting off what I suspected would be a lot of pain, so they left and told me they'd come back in an hour or so.
At 11:30 I knew it was my last chance to try and convince Baby Vegas to be born on his due date. Doctor G and the nurse came back in and we did two more pushes together before they informed me it was still a long road down the birth canal for Baby Vegas. Sigh. Off they went!
Then I just chatted for awhile with the family, dozed off a little here and there, and waited for Baby Vegas to get his bags together and start heading out. His due date passed us by, and at one am the next morning I was finally feeling enough pressure that it seemed time to push!!
So the doctor and nurse came back in, and we started pushing. My pushes were only effective about half the time, but they never made me feel like I was "failing" or being difficult - which was another huge difference from my previous labor experience. The whole time the doctor just encouraged me through contractions but never tried to rush me through the process. My amazing nurse kept assuring me I was doing great and offering me anything I needed. Hubs stayed at my left leg the entire time holding me and telling me he loved me (even when the nurse offered him a chair and I assured her he definitely did not need a break if I was not getting one!) My right leg was alternately held by a nurse-in-training, my mom, and my little sister.
Eventually my nausea came back and I puked up those formerly delicious tacos. Ick. But then I felt 100% better and was able to focus a little more on my pushes. Unfortunately after an hour and a half of pushing I still hadn't made much progress. I started getting worried then that my doctor would try to push me towards a c-section, which terrified me. After every push I insisted there would be no need for a c-section, and bless that doctor's heart she just smiled and said that as long as the baby and I were doing well that there was no rush. And THAT is when I fell in love with my doctor.
Eventually my little guy started having tiny dips in his heart rate, and the nurse let me know that the cord might be wrapped around his neck. That was the only moment where Hubs and I looked at each other with a little fear, but then she reassured me that everything would be alright and that the doctor would make sure he was okay. At that point I joked to the doctor and nurses that every time they gave me an update on the baby they needed to end the sentence with "but everything is fine". So they started doing that and it really helped out with a lot of my anxiety.
Finally at 3:15 AM the nurse suggested that we do a "tug-of-war" technique to help make my pushes more focused and effective. She held one end of a bedsheet while I held a knot on the other end, then during my contractions I would tug on the knot as I pushed. All of a sudden my pushes were moving him out - everyone started rushing around getting ready to welcome my little one into the world! At 3:49 AM Baby Vegas finally arrived as my Hubs and my sister were both by my side. The doctor immediately put him on my chest because we had decided to do delayed cord clamping (which means we waited until the umbilical cord stopped pulsing before cutting it) which was great because after that it was awhile before I got to hold him again. Hubs bravely cut the cord, and then they took our little guy off to get cleaned up while I got repaired down below. (All I will say about that is, that I fared much better than I did with my first birth.)
Baby Vegas was 8 lbs, 2 oz, and a shocking 22 inches long! They had told us at his ultrasound that he was going to have hair - but holy moly, did he come out with hair!!! We had our doctors and nurses check and double check everything about him, and he was 100% healthy and typical. That amazing nurse stayed next to me for awhile while I urged the Hubs and family to stay with the baby, and she just kept assuring me of how wonderful and perfect he was in my ear, and it took everything I had not to dissolve into great big sobs. I couldn't believe I had made this perfect little boy, that everything was going to be okay, that there was no great big hammer about to drop out from the sky and crush us.
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| Welcome to the world Baby Vegas - we've been waiting for you! |
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| Check out that hair!! |
And that folks, is how babies are born. Or at least, this one baby, who has already become one of the most precious gifts I've ever received. Which is why it has taken me three weeks to finish writing this post, because he has thrown us all into a whirlwind of falling in love with him, and being parents to two amazing little boys.
My next few posts will be Baby Vegas-focused because I want to write about my post-partum recovery and how his first few days home have been... but then its all about Little Man again because we got the final date for his big IEP meeting!!! Now that I've finished writing this monster of a post, hopefully I can crank these next updates out a little sooner!
Monday, April 22, 2013
A Typical Appointment With Little Man
Last week was hellish. I over-scheduled the HECK out of the Little Man, and almost gave myself a nervous breakdown. We had two in-home PT visits, a visit from our caseworker, a dentist visit an hour away, and then an orthopedic appointment that was two hours away.
Anyways, the dentist appointment was 15 minutes long, and his teeth are all fine. I'm shocked that he hadn't worn his teeth down to little nubs, but the dentist assured me his teeth are stronger than I think they are. But no cleanings until we are cleared by a medical doctor, since he has a shunt sometimes they are required to give him an antibiotic before a cleaning and I had never heard of that before. So really I just helped the doctors hold his arms and legs down to count his teeth while he screamed bloody murder.
Between the screaming and the 2 hours of driving, I came home with a massive headache. Hubs had not originally committed to coming to the ortho visit with me the next day, but one look at my face (and maybe a little pleading) had him changing his mind.
You see, I knew the ortho appointment would be especially painful because I was guilted into accepting a 9 AM appointment time after the receptionist informed me I was about 12 months late for our follow-up. Whoops. Ugh. So this meant that I was going to have to get Little Man up and out of the house by no later than 6:30 AM, because OH WAIT if you have a 9 AM appointment you are supposed to be checked in by 8:30. Ugh ugh ugh.
Of course, the morning of the appointment there was a rainstorm and traffic that meant we didn't get to the appointment til 9:15, despite having left so early. We got there and Little Man was weighed and measured, which meant that he had to start screaming and crying immediately. They asked if maybe they could check his blood pressure and I just laughed. (My standard answer is - "You can try whatever you like, but just know that he will continue to do this until you walk away and leave him alone.) (They did not get his blood pressure.)
We waited in an exam room until the very, very old doctor came in. He said nothing, just sat at his computer for about ten minutes reading the charts. So of course... we said nothing. Hubs kept looking at me like I was going to do something magical to get the appointment started, but he's a novice at these things. I kept my mouth shut and the kid amused until the doctor finally turned to us to begin the torture...er... appointment.
He had Little Man lay on his back and then stomach, manipulating his legs and feet like he was made of rubber. Cue the screams. The exam room has a giant bed for this sort of thing, so I flopped on my belly with the DVD player and held it above Little Man's head hoping it would distract him from the man-handling his legs were getting. Hubs got the best job (ha. ha. ha.) of holding the flailing upper limbs. Then we had to take off his pants and let him run around the room while the doctor and a therapist observed his walk.
More silence and chart consulting. Of course, this was a little different kind of silence as we were busy trying to calm Little Man, who was apparently convinced that screaming til he was hoarse would mean we might leave soon.
Hubs then got to take Little Man down to x-ray for more pinning down and screaming (thanks for getting me out of that one Baby Vegas!), and I got to wait in the room with the doctor while he thought really hard and mumbled ideas to the therapist. I took this time to show them that both his hip abduction brace and his nighttime leg-brace were destroyed and he hadn't been wearing them. Because of the teeth. He ripped the metal screws out of the brace with his teeth, and then chewed up the foam and rubber. You think I'm kidding?
There. Proof. I exaggerate not.
So after the x-ray showed that his hips had shifted thanks to whatever limited wear he'd gotten out of that brace, they decided that he would no longer have a nighttime brace for his leg. He'd wear a day brace and that would hopefully keep him from chewing it apart when I'm not looking. We shall see how that goes, but I think it is honestly the only option for him right now besides "no brace."
Unfortunately this meant we'd need to cast his leg for the new brace.
If you're picturing a 38 pound four year old with incredible leg strength screaming and twisting in absolute terror while his dad pins him down in his lap and his mother holds back his arms... you're close to imagining the casting. Just add a really strange (but very nice) man who is frantically trying to wrap quick-drying plaster onto one of the kicking legs and hold the foot flat while it set. Oh and a freaking razor when it was time to cut the cast off the still-kicking leg.
Mother of pearl, it was not a good time for any of us.
By the time we left at almost noon, Little Man had screamed himself hoarse and eaten four packs of fruit snacks as "reward" for not climbing up the walls. But it was over, and we were alive. Hubs reminded me to make sure to schedule the follow-up appointment at a reasonable hour since I was no longer wracked with guilt. Turns out, really old doctors can set their own schedules. This guy only works from 9 AM - 11 AM twice a week. *Sigh* Til next time then.
This post is dedicated to Hubs... because seriously... there is no way I would have made it through that appointment without bursting into tears if I was there by myself. Sometimes (rarely) I forget how awesome it is not to be a single parent anymore, and then crazy shit like this reminds me.
I made him some muffins the next day. Muffins are always a great way to say "Thanks for willingly going through torture for us. We love you too."
Anyways, the dentist appointment was 15 minutes long, and his teeth are all fine. I'm shocked that he hadn't worn his teeth down to little nubs, but the dentist assured me his teeth are stronger than I think they are. But no cleanings until we are cleared by a medical doctor, since he has a shunt sometimes they are required to give him an antibiotic before a cleaning and I had never heard of that before. So really I just helped the doctors hold his arms and legs down to count his teeth while he screamed bloody murder.
Between the screaming and the 2 hours of driving, I came home with a massive headache. Hubs had not originally committed to coming to the ortho visit with me the next day, but one look at my face (and maybe a little pleading) had him changing his mind.
You see, I knew the ortho appointment would be especially painful because I was guilted into accepting a 9 AM appointment time after the receptionist informed me I was about 12 months late for our follow-up. Whoops. Ugh. So this meant that I was going to have to get Little Man up and out of the house by no later than 6:30 AM, because OH WAIT if you have a 9 AM appointment you are supposed to be checked in by 8:30. Ugh ugh ugh.
Of course, the morning of the appointment there was a rainstorm and traffic that meant we didn't get to the appointment til 9:15, despite having left so early. We got there and Little Man was weighed and measured, which meant that he had to start screaming and crying immediately. They asked if maybe they could check his blood pressure and I just laughed. (My standard answer is - "You can try whatever you like, but just know that he will continue to do this until you walk away and leave him alone.) (They did not get his blood pressure.)
We waited in an exam room until the very, very old doctor came in. He said nothing, just sat at his computer for about ten minutes reading the charts. So of course... we said nothing. Hubs kept looking at me like I was going to do something magical to get the appointment started, but he's a novice at these things. I kept my mouth shut and the kid amused until the doctor finally turned to us to begin the torture...er... appointment.
He had Little Man lay on his back and then stomach, manipulating his legs and feet like he was made of rubber. Cue the screams. The exam room has a giant bed for this sort of thing, so I flopped on my belly with the DVD player and held it above Little Man's head hoping it would distract him from the man-handling his legs were getting. Hubs got the best job (ha. ha. ha.) of holding the flailing upper limbs. Then we had to take off his pants and let him run around the room while the doctor and a therapist observed his walk.
More silence and chart consulting. Of course, this was a little different kind of silence as we were busy trying to calm Little Man, who was apparently convinced that screaming til he was hoarse would mean we might leave soon.
Hubs then got to take Little Man down to x-ray for more pinning down and screaming (thanks for getting me out of that one Baby Vegas!), and I got to wait in the room with the doctor while he thought really hard and mumbled ideas to the therapist. I took this time to show them that both his hip abduction brace and his nighttime leg-brace were destroyed and he hadn't been wearing them. Because of the teeth. He ripped the metal screws out of the brace with his teeth, and then chewed up the foam and rubber. You think I'm kidding?
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| Nom nom nom! Look closely for teeth marks and missing screws... :) |
There. Proof. I exaggerate not.
So after the x-ray showed that his hips had shifted thanks to whatever limited wear he'd gotten out of that brace, they decided that he would no longer have a nighttime brace for his leg. He'd wear a day brace and that would hopefully keep him from chewing it apart when I'm not looking. We shall see how that goes, but I think it is honestly the only option for him right now besides "no brace."
Unfortunately this meant we'd need to cast his leg for the new brace.
If you're picturing a 38 pound four year old with incredible leg strength screaming and twisting in absolute terror while his dad pins him down in his lap and his mother holds back his arms... you're close to imagining the casting. Just add a really strange (but very nice) man who is frantically trying to wrap quick-drying plaster onto one of the kicking legs and hold the foot flat while it set. Oh and a freaking razor when it was time to cut the cast off the still-kicking leg.
Mother of pearl, it was not a good time for any of us.
By the time we left at almost noon, Little Man had screamed himself hoarse and eaten four packs of fruit snacks as "reward" for not climbing up the walls. But it was over, and we were alive. Hubs reminded me to make sure to schedule the follow-up appointment at a reasonable hour since I was no longer wracked with guilt. Turns out, really old doctors can set their own schedules. This guy only works from 9 AM - 11 AM twice a week. *Sigh* Til next time then.
This post is dedicated to Hubs... because seriously... there is no way I would have made it through that appointment without bursting into tears if I was there by myself. Sometimes (rarely) I forget how awesome it is not to be a single parent anymore, and then crazy shit like this reminds me.
I made him some muffins the next day. Muffins are always a great way to say "Thanks for willingly going through torture for us. We love you too."
Monday, April 1, 2013
April Truth
Welcome to April, the month where nothing happens and the weather is ridiculous.
This last week has been a whirlwind of activity - a couple of therapy appointments for Little Man, the Passover dinner we went to (the food was amazing, the company awesome), and then Easter which we split between Hubs' family during the day and mine at night. For awhile it felt like we never stopped moving! This week promises to be a lot more laid back, which I am absolutely ready for right about now.
Therapy has been going well for Little Man. He seems to be liking the new PT, and she is willing to work around his little quirks. You know, where he can't walk too far from the t.v. and he needs constant fruit-snack rewards. We're down to maybe one or two mini-tantrums a lesson, which is a huge improvement from last year when the lesson was a giant tantrum the full time.
At his behavioral appointment, his doctor seems pretty concerned right now for poor LM's teeth. The chewing/biting/gnawing is out of control, and there is nothing we seem to be able to do to stop it. He gave him another Chewy Tube which he loves, but it still doesn't distract him from the fact that everything looks so delicious nom nom nom! Even with the Chewy Tubes and designated chewable toys, Easter weekend alone had him chomping on the following non-edible items;
* The side of the dining room table at the Easter brunch
* The decorative pillows on Grandma's couch
* The bottom of the one remaining sippy cup that does not leak
* The edges of his DVD player, and also the electrical cord that powers it
So we've got another appointment in two weeks to see the doctor again and talk about how the attempts at distracting LM from "non approved" chewing objects works out. That, in addition to the miles of paperwork I have to do to prep for his IEP and therapy evaluations with his coordinator (I have over thirty pages of diagnostics and forms), setting up visits with ortho/hemo/dentist/pediatrician, and then my own appointments to follow up on Baby Vegas - whew. I guess I really need to redefine "laid back"... at least for this week it means that most of this I can do with a phone glued to my ear, laptop on my lap, and stuck on the couch...
Monday, January 14, 2013
The One With Hormones
I am feeling so overwhelmed today, that it is hard to articulate my feelings.
Little Man had his first appointment in a new neurological clinic last Thursday. I met with a lovely and articulate doctor and she gave me about 3000 things to think about - from the easy to the slightly more challenging. I cried during the appointment. I hate doing that, as it inevitably leads to the "You're doing just fine Mom" reassurance that I feel is just to placate me. It was one of those visits I wish Hubs had been there for, because I think I only absorbed about 85% of the information, and I would have loved having someone to be the levelheaded one while I blubbered away.
As with any general clinic setting, I left her office with plenty of homework. Lots of new doctors to call, lots of diagnoses to follow up on, lots of questions answered and asked. We'll be starting that homework this week with a new neurologist, a speech and language assessment, another developmental test, and working on getting his records organized.
According to Doctor Lovely, 'state law' says Little Man's newest diagnosis (she says no autism by the way) means he should be getting 45 minutes of Speech Therapy 5 days a week. Which he is not. He is getting 0 minutes of therapy a week. Why? Well when I told the county that I was not comfortable with Little Man in the school setting they offered or riding a bus to school, they basically told me "Bummer. Now we stop home services. See ya in Kindergarten." Doctor Lovely agrees with me that Little Man would be better suited for home therapy, and she is going to try to help us get some from the county.
I am not holding my breath. But I am hopeful. This clinic is a little different in that they don't take any insurance coverage and are entirely funded by "generous donors." So they run things a little differently, and maybe that is going to be a good thing. Little Man is receiving a "scholarship" to go there, which is great. And also fun to brag about. My four year old has a scholarship.
Unfortunately the appointment on Thursday sent me into a really big tailspin. I left the office so drained I didn't even have the strength to drive home. I stopped by my godparents house until I could finally pull myself together. When I got home I was a wreck. The "what-if" demon was dancing around my thoughts, along with his "you don't do enough for your child" and "you're failing" siblings. I felt like a crushing weight had been placed on me, and I couldn't get out from under it no matter how hard I tried.
I woke up several times during the night just crying and wishing I knew what the whuck was going on with my emotions. Hubs of course chose this moment to come down with a massive toothache. Like I believed THAT. (Kidding kidding, all jokes aside the poor guy had his tooth yanked out the next day so he wasn't really on his game either!) But even if he'd been able to talk, he couldn't have stopped the crazy thoughts and buckets full of tears. There came a point where I just really didn't even know why I was upset anymore, I just knew that things were bad and I felt like they'd never get better.
The mood swing hasn't really gone away yet. I did get to celebrate my birthday this weekend with my family and friends which kept me out of the funk for most of Saturday. But today I woke up blue again and there really wasn't a trigger.
I know my hormones are all kinds of crazy with Baby Vegas working on his legs in there (he's plum sized this week!), so I keep reassuring myself this will pass just like the morning sickness. Right now I barely have the energy to move from the bed to the couch. But I can and I will power through this - and hopefully I won't piss off too many people in the process.
Little Man had his first appointment in a new neurological clinic last Thursday. I met with a lovely and articulate doctor and she gave me about 3000 things to think about - from the easy to the slightly more challenging. I cried during the appointment. I hate doing that, as it inevitably leads to the "You're doing just fine Mom" reassurance that I feel is just to placate me. It was one of those visits I wish Hubs had been there for, because I think I only absorbed about 85% of the information, and I would have loved having someone to be the levelheaded one while I blubbered away.
As with any general clinic setting, I left her office with plenty of homework. Lots of new doctors to call, lots of diagnoses to follow up on, lots of questions answered and asked. We'll be starting that homework this week with a new neurologist, a speech and language assessment, another developmental test, and working on getting his records organized.
According to Doctor Lovely, 'state law' says Little Man's newest diagnosis (she says no autism by the way) means he should be getting 45 minutes of Speech Therapy 5 days a week. Which he is not. He is getting 0 minutes of therapy a week. Why? Well when I told the county that I was not comfortable with Little Man in the school setting they offered or riding a bus to school, they basically told me "Bummer. Now we stop home services. See ya in Kindergarten." Doctor Lovely agrees with me that Little Man would be better suited for home therapy, and she is going to try to help us get some from the county.
I am not holding my breath. But I am hopeful. This clinic is a little different in that they don't take any insurance coverage and are entirely funded by "generous donors." So they run things a little differently, and maybe that is going to be a good thing. Little Man is receiving a "scholarship" to go there, which is great. And also fun to brag about. My four year old has a scholarship.
Unfortunately the appointment on Thursday sent me into a really big tailspin. I left the office so drained I didn't even have the strength to drive home. I stopped by my godparents house until I could finally pull myself together. When I got home I was a wreck. The "what-if" demon was dancing around my thoughts, along with his "you don't do enough for your child" and "you're failing" siblings. I felt like a crushing weight had been placed on me, and I couldn't get out from under it no matter how hard I tried.
I woke up several times during the night just crying and wishing I knew what the whuck was going on with my emotions. Hubs of course chose this moment to come down with a massive toothache. Like I believed THAT. (Kidding kidding, all jokes aside the poor guy had his tooth yanked out the next day so he wasn't really on his game either!) But even if he'd been able to talk, he couldn't have stopped the crazy thoughts and buckets full of tears. There came a point where I just really didn't even know why I was upset anymore, I just knew that things were bad and I felt like they'd never get better.
The mood swing hasn't really gone away yet. I did get to celebrate my birthday this weekend with my family and friends which kept me out of the funk for most of Saturday. But today I woke up blue again and there really wasn't a trigger.
I know my hormones are all kinds of crazy with Baby Vegas working on his legs in there (he's plum sized this week!), so I keep reassuring myself this will pass just like the morning sickness. Right now I barely have the energy to move from the bed to the couch. But I can and I will power through this - and hopefully I won't piss off too many people in the process.
Monday, December 10, 2012
The One With Anxiety
Not mine, Little Man's. Although his anxiety is causing me a ton of anxiety, which in turn is making Hubs kind of bonkers. But it begins with Little Man, unfortunately.
We had another visit with his behavioral psychologist last Friday, and mentioned some of Little Man's newest quirks;
* TV shows that he loves one minute are incredibly upsetting the next, to the point of him collapsing on the floor in hysterical tears. This can come even after we've watched the same show on loop for 3 hours - suddenly whatever is happening is no longer good.
* Hugging himself and pinching his arms when he is upset about something. To the point where he can bruise himself.
* Crying so hard in the middle of the night that he can't calm down, for seemingly no reason. He'll cry so long he loses his voice.
*Periods of time where he is laughing hysterically at something and then seconds later is melting down in a puddle of tears.
We'd been chalking up all the behaviors to Little Man being four years old. Ya know, he's had too much sugar and is a wild child today, or he's been up for too long and he's so tired... He hates that episode of his show. He doesn't like that sound, or food, or ambient lighting.
But his psychologist is concerned that a lot of these behaviors are actually labile mood swings, which he assured us are very common in children with brain injuries. And also that Little Man might have some anxiety issues that might be resolved with medication.
*Sigh*
I know it isn't a bad thing to need medicine to manage psychological issues. I know that if we put him on medicine and it doesn't work, we can take him off it again. I know that if it is actually an anxiety problem holding him back from further development, then I will kiss this doctor and thank my lucky stars that we found a way to help Little Man.
But I hate the idea of medicating him. It brings me back to Little Man as a newborn, completely sedated with phenobarbital every day. It makes me think of how hard I had to work to find Keppra and beg doctors to release him to our care despite the fact that liquid Keppra is apparently equal in cost to liquid gold, and there was no way we could pay for it on our own. When I hear the word "medicate" all these memories swirl around my mind and overwhelm me again. I feel hopeless and like I'm not doing enough for Little Man.
I don't like that I feel this way, but I do.
And so Little Man is going to head back to Kennedy Krieger to get evaluated by some of their specialists, and they will determine what plan of action and what medication would be best for him. More doctors, more driving, more therapies. It is a never ending cycle. I am feeling a little blue about it today, but hopefully my anxiety about Little Man's anxiety issues will be resolved soon.
*Bigger Sigh*
In better news, Hubs is doing well, I am doing well, and we're enjoying life as it is settling back into our "normal" routine. I have one more weekend of playing clarinet in a pit orchestra with our local theatre group, and then we are heading to visit family in Wisconsin for a couple of days. Christmas will be here before we know it, and Little Man's bedroom is slowly coming along! Just keep swimming...
We had another visit with his behavioral psychologist last Friday, and mentioned some of Little Man's newest quirks;
* TV shows that he loves one minute are incredibly upsetting the next, to the point of him collapsing on the floor in hysterical tears. This can come even after we've watched the same show on loop for 3 hours - suddenly whatever is happening is no longer good.
* Hugging himself and pinching his arms when he is upset about something. To the point where he can bruise himself.
* Crying so hard in the middle of the night that he can't calm down, for seemingly no reason. He'll cry so long he loses his voice.
*Periods of time where he is laughing hysterically at something and then seconds later is melting down in a puddle of tears.
We'd been chalking up all the behaviors to Little Man being four years old. Ya know, he's had too much sugar and is a wild child today, or he's been up for too long and he's so tired... He hates that episode of his show. He doesn't like that sound, or food, or ambient lighting.
But his psychologist is concerned that a lot of these behaviors are actually labile mood swings, which he assured us are very common in children with brain injuries. And also that Little Man might have some anxiety issues that might be resolved with medication.
*Sigh*
I know it isn't a bad thing to need medicine to manage psychological issues. I know that if we put him on medicine and it doesn't work, we can take him off it again. I know that if it is actually an anxiety problem holding him back from further development, then I will kiss this doctor and thank my lucky stars that we found a way to help Little Man.
But I hate the idea of medicating him. It brings me back to Little Man as a newborn, completely sedated with phenobarbital every day. It makes me think of how hard I had to work to find Keppra and beg doctors to release him to our care despite the fact that liquid Keppra is apparently equal in cost to liquid gold, and there was no way we could pay for it on our own. When I hear the word "medicate" all these memories swirl around my mind and overwhelm me again. I feel hopeless and like I'm not doing enough for Little Man.
I don't like that I feel this way, but I do.
And so Little Man is going to head back to Kennedy Krieger to get evaluated by some of their specialists, and they will determine what plan of action and what medication would be best for him. More doctors, more driving, more therapies. It is a never ending cycle. I am feeling a little blue about it today, but hopefully my anxiety about Little Man's anxiety issues will be resolved soon.
*Bigger Sigh*
In better news, Hubs is doing well, I am doing well, and we're enjoying life as it is settling back into our "normal" routine. I have one more weekend of playing clarinet in a pit orchestra with our local theatre group, and then we are heading to visit family in Wisconsin for a couple of days. Christmas will be here before we know it, and Little Man's bedroom is slowly coming along! Just keep swimming...
Friday, August 31, 2012
The One Where I Curse The City of Baltimore
Thats it, all I have to say. The Grand Prix on Labor Day weekend???
WHOSE IDEA WAS THAT?!?!
The trip that normally takes 4 hours of driving took about 5 1/2 with Grand Prix road closings and traffic.
In other news, Little Man is nearsighted and has a slight astigmatism. But not enough of either to warrant glasses (that he wouldn't wear anyways). I am incredibly impressed that Wilmer Eye Center managed to deduce this while he was screaming, kicking, and then eventually watching his portable DVD player while pushing away any instruments that got close enough to him to touch.
During the final part of the appointment, Little Man passed out sitting up from sheer exhaustion. He'd had behavioral psych before the eye appointment, so we'd been in doctors offices from about noon til four.
At least we had all that traffic to nap the whole way home. Ughhh.
And waiting for us at home was a lovely delivery from Medi Rent. 10 boxes of medical gloves (what???), 15 boxes of crib pads, 1 package of wipes (?), and 260 diapers. Even if we never got another diaper delivery, that's about a 2.5 month supply. Hurray!!!
And now, off to enjoy a Blue Moon during the blue moon. Happy Long Weekend!
WHOSE IDEA WAS THAT?!?!
The trip that normally takes 4 hours of driving took about 5 1/2 with Grand Prix road closings and traffic.
In other news, Little Man is nearsighted and has a slight astigmatism. But not enough of either to warrant glasses (that he wouldn't wear anyways). I am incredibly impressed that Wilmer Eye Center managed to deduce this while he was screaming, kicking, and then eventually watching his portable DVD player while pushing away any instruments that got close enough to him to touch.
During the final part of the appointment, Little Man passed out sitting up from sheer exhaustion. He'd had behavioral psych before the eye appointment, so we'd been in doctors offices from about noon til four.
At least we had all that traffic to nap the whole way home. Ughhh.
And waiting for us at home was a lovely delivery from Medi Rent. 10 boxes of medical gloves (what???), 15 boxes of crib pads, 1 package of wipes (?), and 260 diapers. Even if we never got another diaper delivery, that's about a 2.5 month supply. Hurray!!!
And now, off to enjoy a Blue Moon during the blue moon. Happy Long Weekend!
Friday, July 27, 2012
The One With Shots (Needle, Not Booze)
Doctor's appointments with Little Man are not for the faint of heart. For one thing, we live two hours away from his PCP. So every doctor's visit is a full day worth of adventures.
So since our appointment was at 2 pm, we left the house at 11:30 to make sure we didn't hit any traffic on our way in to the city.
We arrived at 1:30. We were back in the office by 2:00. The appointment didn't end until 3:45.
I know right? It had been awhile since our last visit, I think maybe six months or so. So after catching her up on Little Man's medical history, it was time to chat.
Can I please have a letter for our bed? A prescription for melatonin? A referral for ortho, optometry, and dental? Oh and by the way, he still vomits once a month for no reason. And he chews on everything. Someone said to ask you about parasites? He definitely doesn't have lead poisoning or PICA. He still doesn't eat anything but bread. Of course I give him vitamins and Pediasure. I don't leave the medicine cabinets unlocked. Everything is labelled poison but I *doubt* he's checking the labels on the floor cleaner. I try not to let him fall off things that are high in the air. 4 vaccines?!?! I'm not driving back up here tonight with a stool sample. Yeah I don't think he has a parasite either.
Then I met with a social worker, attorney, and "safety officer". Repeat stories, add details.
In the end, we left with the prescription for melatonin, a few sticks in the leg that he did not enjoy, an application for REM to possibly help us with funding the Safety Sleeper, and a page full of instructions and referrals for the next few months. Its going to be a long grueling process, but I'm hoping to have his biggest medical issues sorted out by the wedding (and the ensuing insurance switch). But as always, I am glad everything was heard and addressed. Hubs had met us at the office (he'd been away on business and his flight got in early enough to meet us in the city!) and brought Little Man back home so I could run errands the rest of the day. They didn't get home til 6:30 because of rush hour traffic.
In case you missed that, that makes *one* doctor's appointment an eight hour process.
Yeah Little Man, we love you.
So since our appointment was at 2 pm, we left the house at 11:30 to make sure we didn't hit any traffic on our way in to the city.
We arrived at 1:30. We were back in the office by 2:00. The appointment didn't end until 3:45.
I know right? It had been awhile since our last visit, I think maybe six months or so. So after catching her up on Little Man's medical history, it was time to chat.
Can I please have a letter for our bed? A prescription for melatonin? A referral for ortho, optometry, and dental? Oh and by the way, he still vomits once a month for no reason. And he chews on everything. Someone said to ask you about parasites? He definitely doesn't have lead poisoning or PICA. He still doesn't eat anything but bread. Of course I give him vitamins and Pediasure. I don't leave the medicine cabinets unlocked. Everything is labelled poison but I *doubt* he's checking the labels on the floor cleaner. I try not to let him fall off things that are high in the air. 4 vaccines?!?! I'm not driving back up here tonight with a stool sample. Yeah I don't think he has a parasite either.
Then I met with a social worker, attorney, and "safety officer". Repeat stories, add details.
In the end, we left with the prescription for melatonin, a few sticks in the leg that he did not enjoy, an application for REM to possibly help us with funding the Safety Sleeper, and a page full of instructions and referrals for the next few months. Its going to be a long grueling process, but I'm hoping to have his biggest medical issues sorted out by the wedding (and the ensuing insurance switch). But as always, I am glad everything was heard and addressed. Hubs had met us at the office (he'd been away on business and his flight got in early enough to meet us in the city!) and brought Little Man back home so I could run errands the rest of the day. They didn't get home til 6:30 because of rush hour traffic.
In case you missed that, that makes *one* doctor's appointment an eight hour process.
Yeah Little Man, we love you.
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