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Blog of the Year 2012

Thank you, Sylvia, for nominating me for a Blog of the Year Award. What a great chance to recognize other bloggers. Sylvia has nine, yes, NINE kids and she blogs about life in the chilly north. Her daughter Bethany is a major focus of the blog because at the age of two she was diagnosed with brain cancer, which she beat, but it left her with a lot of health issues including persistent seizures that kept her confined to the couch for many years, until she she just recently became seizure free.

I highly recommend checking out her blog, as well as my nominees for blogs I really enjoyed in 2012 (which I actually would nominate Sylvia, but do you nominate someone who nominate you? That seems weird. What does blog etiquette call for? 🙂 )

1. You Don’t Know Jack. This is a blog about another child with TSC. For him, TSC meant brain damage and autism, but there’s something to be said for finding such joy in the little things like straws (a marvelous Christmas tree decoration, I must say), and never knowing when one of his toys will apear at the bottom of your coffee cup.

2. Toemail. I once feared the feet of others. Now I follow a blog based  on feet. I love travel and I love that this blog is creating a worldwide community by posting pictures from around the world.

3. My Beijing Survival Diary. I really enjoy reading this woman’s account of living in Beijing combined with travel/living advice.

4. No Points for Style. When I came across this blog, I found myself captivated reading old posts. The world of her son and pediatric mental illness is an overwhelming one, but this blogger is a great source of information.

5. Heartbeat at Our Feet. Another TSC mom blogging about balancing family, TSC, and a massive seizure dog named Denali.

6.  Tiffani Goff at Home. Yep, another blog with TSC as a component. What can I say? I have a vested interest. But it’s another I enjoy following.

7. The Adoptionistas. Two women that adopted two babies from Africa. They read ALL the parenting books. I mean ALL of them. So I just get my parenting tips from them 🙂 .

Here are the rules for this award: 1 Select the blog(s) you think deserve the ‘Blog of the Year 2012’ Award

2 Write a blog post and tell us about the blog(s) you have chosen – there’s no minimum or maximum number of blogs required – and ‘present’ them with their award.

3 Please include a link back to this page Blog of the Year Award and include these ‘rules’ in your post (please don’t alter the rules or the badges!)

4 Let the blog(s) you have chosen know that you have given them this award and share the ‘rules’ with them

5 You can now also join our Facebook group – click ‘like’ on this page ‘Blog of the Year 2012’ Award Facebook group and then you can share your blog with an even wider audience

6 As a winner of the award – please add a link back to the blog that presented you with the award – and then proudly display the award on your blog and sidebar … and start collecting stars…

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2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 4,200 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 7 years to get that many views.

Click here to see the complete report.

Does insurance cover anger management?

Mixed Up Mommy is just really in a pissed off mood today. All these years I’ve taken crap for being part of the teaching community, and everyone likes to crap on the teachers all the time. (“I pay your salary!” Oh yeah, well I pay taxes too, so I guess that makes me self-employed.)  How about we turn that energy and focus it on the medical community…I’ll exclude nurses there since much of the time they seem to be the only ones doing anything, with the exception of Connor’s time recovering from seizure surgery on the seizure floor. They didn’t impress me much, but otherwise, they seem to be the only ones who get anything done. First of all, I’m sick to death of the administrative people. I hate them the most. They don’t give a damn. I’m sick of waiting for phone calls to be returned. This past summer, just to make an appointment with our surgeon, the scheduler took a week to call me back. Scheduling surgery? Another week. I received a bill that made no sense for $200 from the Emory-Children’s Clinic. I spent a month trying to get the billing department to call me back and explain it. I didn’t get a response until I mailed them a letter and sent a copy to every single member of the board, including the CEO. And it was a mistake. We didn’t owe anything. I’m sick of having to call doctors over and over and over. I’m sick of inordinate amounts of time in waiting rooms. I’m annoyed that we spent so long waiting for our eye appointment this morning that the doctor couldn’t even do the full exam because by then Connor was in one of those deep unarousable baby sleeps, and we had to go off the intial exam done by the tech for part of it.

I’m also pissed that I found out that the results of the ERG that was done on Connor’s eyes at Scottish Rite September 7 were never shared with anyone. His eyes have to be monitored because of a risky medication he’s on. This was just the baseline test to see where his vision started out before starting meds, so I wasn’t concerned, but I did notice they never contacted me with results. It was stupid of me not to follow up, but up until now, the one thing that does seem to go well in baby medical care is the sharing of the information. All Connor’s doctors and specialist do a good job of contacting one another about everything and always have on file what has gone on elsewhere. So I stupidly thought that a test that required sedation and admission through day surgery at Scottish Rite would warrant sharing with SOMEONE. But apparently we went through all that so the results could sit somewhere in lala land not be used for anything. Now I get to track them down and get them sent to the other doctors.

But, hmmm, how does one get another department to return your call when one can’t get a return call from the one she’s been trying to get in touch with since Wednesday? Thank you to the EEG department for closing for the weekend without returning any of my calls. Cuz God knows it ain’t no thing to squeeze in a 3-day EEG during the holidays. So I guess it’s the battle of the EEGs and ERGs.

But hey, it’s not your kid. What the hell do you care?

The NICU

Right after birth.

It turns out that if you spend 9 months growing a baby with Oreos (along with the requisite veggies, fruits and grains of course!), even if you significantly reduce your Oreo intake for the following 6 months, you will not be able to then jump on an elliptical and resume your previous 45 minute routine. In fact, after 4 minutes, you will probably have a near death experience. Just a random observation for today.

Soooo picking up from yesterday, the seizures began around 5 or 6. We hadn’t seen him for several hours because of both the regular newborn checkup and the cardiac one. It was actually reaching a point of, “Where is my baby?” frustration. And let me say, care at Northside Hospital is excellent. Communication between floors and departments…not so much. When we started trying to locate him, nobody could find him. We were told to call this nursery, then that and he’d always already been moved. I was told to ask my nurse.  She didn’t know either. This went on for a bit, and then I heard it. Chris was downstairs trying unsuccessfully to locate him as the alarm went off alerting the floor that a baby had been taken past the boundaries. Chris couldn’t get the elevator because they were on lockdown, and then he heard a security guard mumbling into a walkie talkie, saying something that certainly alluded to a baby being missing. This was the last straw that lead to Chris’s very loud and public demand to know where Connor was. And this is when they located him and informed us of the seizures. (The alarm was a staff member accidentally passing the boundary and would happen a couple more times while we were there. No missing babies!)

I wish I had written about this at the time because the emotions are hard to recapture 6 months later. But I could barely talk out loud about it for a couple months. But as scary as it was, we were still in the mindset of, okay, they’ll get these meds going and he’ll be home in a few more days. Well, a few more days stretched into 5 long weeks as the seizures were incredibly resistant to the medication, a hallmark of TSC. He started on phenabarbitol, then Keppra was added, and by the time he left he was on Dilantin as well. But he was still having an extraordinary number of seizures a day. At least 80 a day, maybe more. Many of them were subclinical which means only an EEG can detect it. They don’t cause the outward jerking. At this point it looked like we were gonna have to go on the surgery, so he was transferred across the street to Scottish Rite. I could have carried him over, yet it involved a $1500 ambulance transfer. Thank God for insurance.

I can’t believe there was a time when it was taxing to feed him 2 ounces (due to medication induced sleepiness) considering he’s now 6 months old and wearing 12-18 month clothing.

We met with his potential surgeon Dr. Chern at Scottish Rite. At this point we were finally miraculously seeing some improvement with the meds. He was still having a number of seizures, mostly subclinical, but it was decided that the benefits of waiting to do the surgery when he was bigger outweighed the cons. It would be safer in a few months. So after 5 weeks of driving to the hospital every day, he was finally released on April 23, 2012. And I have to say my husband got me through this. He was a rock. He had his moments, but I would have lost my mind without him. Just the simple fact of having a sick child is scary enough, but on top of that it shattered that “it can’t happen to me” belief that gets many of us through life. I’m a worrier by nature. Takeoff makes me nervous and the word cancer makes my stomach turn. And yet I still fly and could improve some health habits. Now for the first time, I truly realized that anything can happen to anyone at anytime. My plane could crash. I could actually get cancer. Fortunately we had so many other family and friends there to support us through all this. So thank you to all of you.

He never exactly had issues eating, but he would be so sleepy from meds and seizures that a feeding tube was used from time to time.

Connor’s official diagnosis wouldn’t come for several weeks. That’s the genetic test confirming his TSC, but from the rhabdomyoma in the heart, and the seizures, tuberous sclerosis was the immediate thought. He subsequently had an MRI for his brain, a kidney ultrasound, and an eye exam as those are areas most commonly affected. Thank God his kidneys and eyes were clear. But clearly the brain wouldn’t be. The tubers, including the one that would be surgically removed were evident. For my next entry I will get into the specifics of what TSC is.

Breastfeeding never worked out with all that was going on, so I pumped for the next 3 months until I couldn’t take being attached to the machine anymore. But it may have been for the best considering I had to carefully time my glasses of wine around pumping. Otherwise I probably would have knocked out a bottle on a nightly basis. When I tried going online for advice, I was shocked by how harsh and nasty a lot of the hardcore breastfeeding community is. It left me with a lot of guilt when I finally quit, but I had to for my mental state. It also left me disappointed that there was yet one more way in which women can be extremely unsupportive of other women. It’s easy to judge when everything goes hunky dory according to plan, isn’t it? I still have hostility about it. But women need to know that it’s extremely common to have problems with latching, pain, lactation failure, and many other things. So NYC’s Mayor Bloomberg can stick it where the sun don’t shine.

I can’t remember if this particular EEG was 24 or 48 hours.