Tag Archives: Children’s Healthcare of Atlanta

A night in the hospital.

There has been a lot going on lately. Last Sunday I attended the celebration of life for Trinity Sumlin. I met her mother Sheryl when we were fighting for medical cannabis and HB 885 during the last Georgia legislative session. A couple months after HB 885 failed to pass — thanks to political gameplay, not lack of support — Sheryl took Trinity to Colorado to treat her. They were one of the families I shared about in this post. But sadly, Trinity passed away September 5. She was only 11. I was honored that Sheryl asked me to write the story to go in the children’s book she wanted to pass out at the celebration.

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Connor’s seizure activity has been up and down. We really don’t see much activity in his waking hours, with the exception of little myoclonic jerks of his arms or sometimes his head. But all his complex-partial and tonic-clonic seizures are sleep related, so those happen during naps or at night. He’s also had a couple strange incidents in which he was not having obvious seizure activity, but he was weak and lethargic as though he had. Sometimes that has lasted several hours which concerned us. On Friday he was like that all day. Sometimes he’d start to perk up, only to decline again. He couldn’t sit on his own or even support his head. I slept with him on Friday to keep an eye on him. By midnight he was raring to go and things looked promising. Saturday morning he wasn’t quite as perky, but he did eat breakfast well (the day before he had no interest in drinking and eating) and was laughing so we thought it would turn out to be a normal day. Chris’ parents were in town and we all  had plans to go to the North Georgia State Fair. This is how the day started:

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As you can see, Connor looks less than enthralled. The one ride I took him on I had to hold his head to keep him from slumping over. We had never had two days of this before and all I could think was that there was some subclinical seizure activity going on (for those who don’t live in the world of epilepsy, that means seizures that appear on EEG but don’t cause visible activity). We called his neurologist’s office and his actual neuro also happened to be the one on call–which makes life soooooo much easier–right, TSC families?! When I told him he wasn’t really eating or drinking, he advised us to go to the ER. We were hesitant. believe it or not. That probably sounds crazy to those outside this life, but as most of us who have been dealing with this stuff for a while know, you start to realize how little can really be done at the ER. You’ll find many special needs families that have the attitude of “what can you do at the hospital that I can’t do at home?” (Besides infect me with MRSA).  I mean if he was in a status seizure, or had something life threatening going on, that’s obviously ER territory, but this? We weren’t real confident. But it had been going on so long, we followed the advice. This is how the weekend ended up:

Getting fluids in the ER.
Getting fluids in the ER.
This bandaid is AMAZING!
This bandaid is AMAZING!
Typical man.
Typical man.
Perking up!
Perking up!
Doc says it's time to roll out! (to tune of Ludacris)
Doc says it’s time to roll out! (to tune of Ludacris)

They ran all the standard blood and urine tests (Connor chose not to pee for hours so when he did fill the bag there was no way to get it off without spreading the golden warmth everywhere). He was also hooked up to a keto-friendly (he’s on MAD) saline drip. Tests all came back normal. But when he didn’t really perk up after the saline, our neuro told the ER doctor not to send us home. This is where things got hairy. The ER doctor told us we were being admitted because of possible subclinical activity. So guess what we thought? How does one find out about subclinical activity? WITH AN EEG!!! I went home to pack a bag while Chris stayed with Connor. I was on my way back when I got the text. We were admitted , but they don’t do EEGs on the weekends. The rest of my texts to Chris were 90 percent F-bombs. The. Monopoly. Children’s. Healthcare. System. In. Georgia. Doesn’t. Do. Emergency. EEGs. On. Weekends. I was well aware that they didn’t schedule routine EEGS on the weekend, but…but…but… (And I later found out this happened to another TSC family who went in with INFANTILE SPASMS on a weekend).  This is inexcusable. Utterly inexcusable. But I’ve never been quiet about how I feel about Children’s Healthcare of Atlanta at Scottish Rite (or CHOA in general). So we spent the night with Connor hooked to an IV to keep him hydrated. He did start to perk up late that evening and was much better the next day so we were discharged. I was happy to have him get the IV until he would eat and drink again and I totally understand why he was admitted. When we talked to Connor’s neuro, he said that was the reason he asked for us to be admitted, and that’s fine. The ER doc was either confused or we misunderstood the implication about the EEG, I guess.

But that doesn’t change my thoughts on the matter. There is no excuse that someone can’t get an EEG on the weekend for an emergency situation. I understand that hospitals aren’t as heavily staffed at that time, but this is not okay. So if a child has a seizure for the first time ever on a Friday night, you are crap out of luck until Monday? If a child presents with infantile spasms on a Saturday morning, too bad? We can’t confirm until Monday even though IS requires immediate treatment? I’m just at a loss.

I do want to say that other than that, the stay itself was probably the best one we’ve had. Attentive and proactive nurses and the attending doctor on the floor was fantastic, a far cry from the time he got EEG glue in his eye and I had to demand something be done for 17 hours before anyone would look at him. By then his eye was swollen shut and he was in terrific pain and requiring antibiotics. It also made me feel better about the fact that it took 16 hours to get paper towels brought to the room and that the urine sample that was spilled never got mopped or sanitized (there went our four paper towels that were left in the room). Requests were definitely made by our nurse and techs for those things to happen, but whoever was on the other end of the line has a sweet job because they never bothered to do it.

On an amusing note, the pharmacy didn’t have his meds on hand (a specialty one they never have, and the other they didn’t have in the right form) so we were asked to turn over our meds to be dispensed by the pharmacy. (Wonder what that will look like on the bill?) They have to keep his Onfi under lock and key because it’s a controlled substance. His Klonopin is too, but I didn’t turn that over since it’s just for clusters. It’s funny to think he’s prescribed two meds with more street value than the medical marijuana the law prohibits me from having.

Rosie the dog and Connor had an exciting couple of weeks. My parents went to Italy so we had their batsh** crazy full-grown kittens for two weeks. Rosie is in love with Thatcher the black cat. Followed her adoringly and stalkerish the whole time. She also enjoyed chasing Theo, who spent a good portion of the past two weeks hissing at everyone. One of them broke a wine glass. They were allowed to live only because my wine wasn’t in it.

I awoke one morning with four cats in my room looking at me. It was an eerie glimpse into the life of a cat lady, a possible calling I chose to ignore. I emailed my mom to tell her of the terrifying experience and she responded by offering to bring these back from Italy for me:

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Random note: Connor and I made the local news. Check it out here.

I leave you with photos of our zoo. Our two cats are not present in the photos as they opted not to set foot outside our bedroom for the duration of this social experiment.

My mom bought them a cat tent for the stay should they become too unruly during the stay...Connor took a liking to it--more than the tent we actually bought him to play with.
My mom bought them a cat tent for the stay should they become too unruly…Connor took a liking to it–more than the tent we actually bought him to play with.
I'm like a cat. I wanna sit in laps.
Me, me! I’m like a cat! I wanna sit in laps!
Might as well taste the goods.
Might as well taste the goods.
Rapunzel....Rapunzel...
Rapunzel….Rapunzel…
Neighborhood Watch
Neighborhood Watch
Wanna play?
Wanna play?
Where are you going?!
Where are you going?!
Naptime.
Naptime.
I don't know what they were doing, but somehow they collapsed the tent down on themselves.
I don’t know what they were doing, but somehow they collapsed the tent down on themselves.
What goes around, comes around.
What goes around, comes around.








 

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I never thought I would be writing this story. I never thought we would be living it.

Second Annual “Blogging for TSC Awareness Month” Day 25

by guest blogger Becky Ruppe  (Cumming, Georgia)


photoI will start off by saying how hard it is to sum up our journey as it is a never-ending battle and the past seven months seem like years. Our story with Tuberous Sclerosis Complex 2 begins with twins, after many times trying to start a family and after trying everything; as soon as we stopped trying, we were blessed with twins. We were so happy, but we would soon find out; everything was not as it seemed. As time progressed in the pregnancy, his twin sister passed in the womb from another rare disorder, Trisomy 13. Not long after all that, on ultrasound, the doctors found tumors in our son Ben’s heart. We were devastated by this news and still recovering the loss of his sister.  That day was tough and the first time we had ever heard the words Tuberous Sclerosis. I remember thinking there is no way we could have two rare things, but as time progressed more tumors popped up on ultrasound and we were told our son Ben had an 80% chance of having TSC. He had more than seven tumors in his heart and one that should have been blocking his outflow; it kept growing and growing. It was honestly a miracle that he was surviving, as the one blocking his flow was so large. We found every day was a challenge emotionally and we had nothing left to do but to pray for a miracle that we wouldn’t have to do an emergency c-section to try to save his life with open heart surgery to remove it.

We had fetal MRIs to look for tumors in his brain, but nothing showed up. Finally on October 23 we gave birth by c-section to our son James Benjamin Ken Ruppe, he went straight to the Nicu when born, he was not eating and was given a feeding tube and was given medicine to keep his blood flowing through his backup channel in his heart. We stayed hopeful, but by day three they did an MRI and we were walked into this tiny room and given the findings of his MRI. I remember that walk like it was yesterday, I had tears before we even made it to the door. They found multiple tubers and nodules in his brain and was given the actual diagnosis of TSC. It was heart wrenching, the hospital made it seem as though it was a death sentence, we had him baptized that night. We were clueless what was going to happen, would he need heart or brain surgery, would the medicine continue working, would he start having seizures, so many questions not one doctor could answer. Then two days later; our son Ben was able to come home. We followed up with three doctors the week we came home. It was overwhelming, scary and honestly I don’t know how we made it through all that.

Since giving birth, most of his tumors have reduced in size in his heart and he is currently in therapy once a week for muscle loss due to his TSC. He started photo-1having seizures New Year’s Eve and ironically those seizures did not show up on his EEG. He has had several EEGs,  and the seizures have become more frequent. About two months ago we were told his EEG reflected localization epilepsy with focal onset seizures. It has been really horrible to watch him go through all this. Every EEG brings tears for our son.

Thankfully, when we found out about the possible diagnosis of TSC, I reached out to the Tuberous Sclerosis Alliance and have met a really great support group. We also enrolled our Ben into two studies that we travel to Boston for.

Most recently we noticed Ben started to drop his head and we called his neurologist and went into the hospital for a VEEG.  Within an hour and half of him being hooked up, the doctor came in to tell us he was in fact having infantile spasms. The funny thing was that they give you this button to push every time he has an episode. I pushed the button twice during that hour and half. What I found out later, was that he had multiple spasms and clusters and other seizures that I did not even recognize. I will say it was very frustrating that nobody came in and showed me on the video — this is a spasm, this is a seizure. I was told by the Children’s Hospital in Atlanta that they do not have the medication Sabril, which I understand is the best med of choice to treat Infantile Spasms. This to me was a load of crap. How can you not have this medicine and why did we have to wait to get our son the best treatment when from day one we were told that Infantile Spasms can be deadly?

They said I had to wait and get it from his doctor’s office and they sent me home with Klonopin. He was already taking Keppra for complex partial seizures.  Thankfully, his local neurologist Dr. Flamini got us the meds in two days, but in my mind it was still unacceptable to be sent home without the best meds for his treatment.

Since coming home from the hospital Ben is having probably close to 70 + seizures a day.

We have increased some and lowered others of the meds he is taking. We are currently on day 4 and waiting for a change. His spasms have changed into something completely different, with the occasional head drop.  Now looking back, when Ben was 8 weeks old, he was extremely colicky. We took multiple videos and were always told it was nothing and that he was fine, but I know now, judging from his current colicky status (Infantile Spasms) that he was in fact having IS and or some seizure activity as a baby and because his EEG was not showing it and based on opinions of doctors, we delayed treatment. I also know that his infantile spasms are not the normal spasms you would see. They are not as defined and often rotate from one side to the other.  We also were told recently that he has multiregional epilepsy and that he is not the best candidate for surgery.

If I could go back, I would have started medication sooner, because who can help but wonder what damage has been done.  In five days, my son went from having excellent head control to having very little and he also went from being able to stand and put weight on both his legs to not being able to do that for more than a second.

This past Saturday we called 911, as Ben had a seizure that lasted over 20 minutes. The EMS came and they said his heartbeat was fast, but everything else was good and we just continued to watch him per his local doctor.  I am not sure how everyone else feels about giving your baby medications, but giving my Ben three medications twice a day is a struggle. It is hard… every time I have to mix it, I have to take a deep breath to get through it.

I will never give up on my Ben. My husband and I are in a constant struggle with acceptance, and no matter what people say, it is sad and it is hard. There is nothing that can describe watching your son, your sweet innocent baby boy, have seizure after seizure and all we can do is sit back, love him and watch. TSC is the worst pain in the world to us. We aren’t giving up, but we are giving in to the emotion that we are allowed to feel pure anger and a little helpless at times, as there are limits to what we can do for him — the rest is up to somebody else. I hate every second of every day that I have to watch him suffer.  Many will say that is not a way to live — nope, it is not — but it is our truth. We still check him to make sure he is breathing and we are still living and fighting and find massive amounts of joy in everything else our sweet Ben does — when he smiles and when he loves. Our relationship with TSC is completely unavoidable and that is what makes it suck and it is what it is.

Each day we face TSC, we face many challenges emotionally and financially and many sleepless nights. We want a cure so bad it hurts. You are never prepared for the what ifs. I never thought I would be writing this story. I never thought we would be living it. I never thought I would be giving our son three medications that make him totally not himself. I never thought I would be learning a whole new language. I thought I would be going somewhere completely different. I thought a lot of things. I have wanted to be a nurse my whole life, and I have wanted to be a mother my whole life. I thought so many times I would go to nursing school. I know now that that feeling of wanting all those things is now my reality, I got what I want and wouldn’t trade it for anything,  I am right where I am supposed to be. I thought having a child would be so different and that we would play normal people, but turns out we are, it’s just our normal day to day is just a little different than others.

I love every minute I have with my precious Ben, I love that I have been able to jump right in and take care of him. I love that I can make him smile. I love that my husband is such a great father and husband to me. I know that TSC affects us, but it also affects our friends and family, as they are constantly in this battle with us. We are thankful for all the support we have been given, by the TSC Alliance, the TS Mommy site, Dr. Flamini and all the doctors he sees.

photo-2We don’t know how the next year is going to go, we don’t know if he will stop breathing tomorrow from a seizure or if the next seizure will be the one that slows his development even more. Will he need brain surgery? Will his kidneys be affected? Will he be able to have children? Will he learn to walk and throw the ball? All the simple things in life; we are left wondering and hoping. We don’t know what kind of life he is going to lead yet. Will we as parents be able to afford the best treatment for him? Watching our son have seizures is something you can’t describe, there are no words. I do know that my son saved my life. If it was not for him, I am not sure I could have made it through the loss of his sister. So, now my husband and I are giving our life to him. I know now that his sister is in Heaven watching over Ben and our family and not a day goes by that I don’t think about how our life would be if we still had her with Ben, but I know now that that happened for a reason. Ben needed his extra Angel and she will take care of us and watch over our family.

We find great comfort with every second we have with him and every morning we wake up to his smile. The light at the end of our tunnel is holding onto hope that research in finding a cure for TSC 2 is continued and that one day there will be more options for treatment for our son and maybe soon medical Cannabis Oil will be legal in the state of Georgia, because after giving my son all of these  harsh medications, I have no doubt that I would choose that first before any of this stuff he is on currently.

My family is the best family in the world. We will never give up and we will fight every day.

Our story with TSC 2 will continue  and one day I hope we can look back on all these hard days and say, We showed you TSC… We showed you…

 

Politics and Pinot

Oh, I have a blog? I should probably update it. I’ve been so busy. I’m starting to get materials together for the D.C. trip with the TS Alliance in March, been filling out paperwork for Connor’s services and looking into starting hippotherapy (horses-yay!), and trying to read the books I bought on the ketogenic diet. I’m a tad bit nervous and anxious to get started. I’ve already tweaked his diet a bit to be low carb and higher in fat, which I think is helping his seizures, but no where near what the diet requires. It’s way too extreme to do without medical oversight. I can’t totally relax though because our appointment in Birmingham is Feb. 4, but that is just to meet with the neurologist. Though I was told he’d be admitted soon after, Connor doesn’t actually get scheduled for the clinic until that appointment. I’m scared they’ll pull some unexpected wait to start out of their pocket. I’d kept our appointment at CHOA just in case they could get us in earlier and save us the travel or in case something went awry with Birmingham. But come to find out, even though Connor’s neurologist has spoken to several people, and I have spoken to several people regarding starting keto, they still have him down for starting modified Atkins diet, even though the plan of action was changed before Christmas.  I wish someone could explain to me how I have several conversations with someone about the fact that I’m bring Connor in for one thing and at no point does anyone say, “oh oops. He’s scheduled for something else!” Whatever. It’s the same old thing with CHOA every time, no matter what it’s for.

I’ve also been wrapped up in the sudden and surprising momentum of the medical cannabis movement in Georgia. The parents I’ve been talking to did an amazing job of getting the attention of the media and several legislators. Things are rolling and there’s more to come! I’ve been emailing my state legislators and the governor and we’re really seeing a lot of growing support. Access to medical cannabis has the potential to be life changing for so many suffering people.

Connor’s stubborness is reaching epic proportions. He will be two in March and he still won’t give up the bottle. A couple weeks ago I thought we were rounding a momentous curve. He has a sippy cup with a mouthpiece that can be interchanged with the bottle nipple. We’ve been more focused on cup drinking lately so it had been a while since I tried putting the actual sippy cup mouthpiece on the sippy cup instead of the nipple. I handed it to him and there was 15 seconds of drinking. My hands were on my mouth, trying not to gasp, practically jumping up and down. Then he stopped, pulled it out of his mouth, gave it a careful visual inspection, realized he’d been had and threw it down. The next 30 minutes were a standoff in which he would have no part of it. He had to accept a few sips from his training cup and his straw cup (which he’ll only take when urged and helped) before I relented and gave him the nipple. I like to create the illusion that I’m winning.

In spite of all this, we did have a great night out this weekend with two of our couple friends. Connor spent the night with my parents and we went to a wine tasting, dinner, had some drinks and hung out at a friend’s place. Part of the excitement was that we would be able to sleep in on Sunday, but I was having so much fun that we didn’t head home until four. I don’t think Chris was too pleased — he really treasures his sleep — but he humored me.

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This morning I met up with Sara and her two boys for a trip to the Fernbank Natural History Museum. I wasn’t really sure Connor would be into it, but he had a blast. They have a pretty sweet play area.

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I’ll close with this open letter written by Aaron Klepinger. I posted previously about his son Hunter.

My son Hunter has had intractable epilepsy for over 8 years and the seizures have severely impacted his development. He was able to do more before his seizures, such as stand unassisted against the couch. After starting to seize, he has regressed to a 1 month old development level. He depends on us for everything (transferring, feeding, diapering, etc.). We have failed 12 pharmaceuticals, often with devastating side effects such as hours of screaming fits, increased seizures, non-stop sleeping, no sleep, etc. We have tried vitamin supplements, chiropractic, intense neuro-developmental therapies, ketogenic diet for 2 years with constant dietary changes, and VNS implanted (https://www.epilepsy.com/epilepsy/vns). 

He also has been diagnosed with a movement disorder. He flails his arms and legs and moves his head in all directions usually for hours at a time, sometimes in rapid succession. He moves and kicks so much in bed, we have had to put his mattress on the floor because he has fallen off the mattress. We are considering having to make a custom bed for him to keep him safe. His wheelchair has had to be customized heavily to stop him from hurting himself. We modified our Georgia home for his protection also. His shower there is extra wide so he doesn’t punch and kick the walls as he did when he was bathed in the bath. We also had to buy a ~$2000 bath chair out of pocket to strap him down while we bathe him. The typical chair covered by insurance would not provide enough support.

Since starting medical cannabis treatment, we are seeing way less seizures, more moments of relaxation, more happiness, greater eye contact, and greater awareness of his surroundings. Throughout his life, he has had a lot of GI issues, including constipation. We have noticed better motility with his bowels as we have increased the medical cannabis. He also used to clench his fists so tightly he would cut his hands with his fingernails. He did this fist clenching almost 24/7/365. He no longer does this.

In reviewing the past ~3 months of online seizure data, his seizures have gone from 17% of days without seizures (likely less than 17% if I dig further into paper records sitting on a moving truck now) to 47% of days without seizures after starting treatment (47% is a confirmed, hard number). Seizures that were 5, 10, or 20+ minutes before are now under 2 minutes. His more mild seizures we can’t even tell if they are a seizure now they are so quick and unpronounced. He holds his arms out as if he thinks he’s going to seize and then the seizure never comes. And this is all on a low dose, having just started medicine. Seizure medicines usually take months to tweak to a proper dose and this is the same way.

Haleigh Cox and 150,000 Georgians that have epilepsy should have the medical option of this gift from God. Thank you for helping us come home and share this medical treatment with so many other people suffering. 

For your colleagues in the House and Senate, Georgia has a great medical tradition, including Emory, the CDC, and many health oriented companies and non-profits such as the American Cancer Society. We should step to the forefront on this health issue too and lead the way for states like Alabama and Tennessee that are considering legislation. Lets look at the science and put patients first. Medical cannabis is improving my son’s quality of life dramatically. It is our moral obligation to end the suffering of sick people. Lets pass some legislation this session before someone dies from unsafe pharmaceuticals. Compare the 40+ side effects (including death) of the most prescribed seizure medicine (Depakote) to the side effects of cannabis (none, virtually). Add to that the benefits that patients are seeing. It is clear the science supports medical use of this plant. Lets move forward with a bill in 2013 so Haleigh can live and Hunter can come home and stop being a prisoner in the state of Colorado.

Why, why, why is it so hard to get my child his medication?

I am an incredible multi-tasker. I am currently writing this blog, on hold with United Healthcare, and having a mental breakdown. Congratulations! You f*&^%$# finally made me cry. I’ve been pissed. But you hadn’t made me cry yet. That took a conjoined effort of United Healthcare, Optum RX, and Accredo Pharmacy.

It started when we got a letter from United Healthcare that they were switching from Medco Pharmacies (which houses Accredo where we get Connor’s Sabril) to Optum RX pharmacies. All mail order prescriptions should automatically switch over. Of course this raised my cautious red flags. So as soon as the change happened April 1 I called to check the status. After talking to a couple different people, it was established that Optum doesn’t carry Sabril (vigabatrin). I was referred back to Accredo. “So everything stays the same?” I asked. “Yes.” I was told. So today I called Accredo to refill the prescription. First time it picks up to silence. So I hang up and call again. Someone answers this time. They would not fill it as my prescription had been transferred over Optum. “Oooookay. So I call them to fix this?” “Yes.”

I call, listen to more piped music, and give all my personal info twice more to Optum to be told that it’s on Accredo to call and ask that the prescription be sent back, and that they should have offered to do so. Call Accredo again. Again, their line picks up to silence, and I have to hang up and call again. More holding. I tell them that they have to call Optum and get the prescription back. They tell me they can’t because I have no active insurance with them after March 31. They still can’t fill it. “So I call united Healthcare and tell them to do what? What exactly do they need?” I’m told to call UH and ask them to open an active account with Medco so Accredo can fill the prescription.

I call United Healthcare, more holding, more giving all my info, lots more holding, trying to explain, getting transferred, and I end up back on the phone with someone at OptumRX again. NOT what I asked for. He again starts the process of refilling Connor’s Sabril. “But two people told me you don’t have it. You’re saying you can fill it now?”

“I have it right here. I’ll take care of this for you.” I wanted to hope for a second, but deep down I knew where this was going again. “Oh, we have the prescription, but we don’t actually have the med.” Yes. Exactly what I’ve been saying. YOU have the prescription, but can’t fill it because you don’t have the med. Accredo has the med, but doesn’t have the prescription or authorization.

Finally, I do what I should have done all along and call SHARE, who works with the manufacturer to deal with prescriptions. They are now working on getting United Healthcare to give an authorization to one of their participating pharmacies so we can refill his prescription. Obviously who I should have called first, but for the love of God, people aren’t psychic. Those of us outside the medical world don’t understand the inner workings. I don’t fully understand the Lundbeck (manufacturer)/Share/Insurance connection. i just know my kid needs his stupid medication. And nobody offered me any instruction on how to handle this. All I got was a letter from my insurance making it sound like a simple switchover.

I guess I am not meant to understand this world of medical mysteries. I suppose I will never know the following:

1. Why a mail order medication can be so difficult to get your hands on, seemingly more difficult and a kazillion times more expensive now than back when people had to get it from Canada because it wasn’t approved here.

2. How a cranial remolding helmet can appear to be covered, I can be charged our uncovered 20 percent, only for United Healthcare to later deny the claim, forcing time to be wasted on an appeal.

3. Why CHOA employees never return phone calls. (Hey Wanda in medical records, it’s been over a month, but fortunately it turned out I don’t need that paperwork after all, so I guess just don’t worry about it.)

4. Why Obamacare doesn’t attack the heart of the country’s issue, which is that hospitals are charging increasingly outrageous prices with no rhyme or reason, operating off of Chargemasters that aren’t standardized or remotely in line with the actual cost of care, and are allowing this medical crisis a major role in the country’s debt.

Et cetera….et cetera…et cetera…

And to top it off, seizure activity is definitely back. I suspected I was maybe seeing very occasional absence seizures, but then yesterday we saw this. So thank you, hospitals and insurance. All the families dealing with health issues can count on you, that no matter how strong they are, how positively they approach their problems, you will always be there to try to break us.

And I guess now, 2.5 hours after getting up, after writing this blog in a mere fraction of the time I spent on the phone this morning, I will finally have my breakfast.

The Axis of Medical Evil, the Board of Education and Gordon Ramsay would totally love my shoe collection.

The weirdest thing happened when I called Boston Children’s Hospital to schedule Connor’s MRI for August when we will be up there for the TSC study again. An actual person answered the phone, and he immediately scheduled the test.

It was surreal. I dialed. Someone answered. Things were accomplished.

Meanwhile, I’m still waiting for Children’s Healthcare of Atlanta at Scottish Rite to return a message I left with the medical records department 2.5 weeks ago. So my list of CHOA departments that don’t return phone calls is now:

1. Scottish Rite EEG (note: call was returned after I recruited neuro office to get involved)

2. Emory-CHOA billing (note: call was returned over a month later once I wrote a letter of complaint and sent a copy to every single board member including the CEO)

3. Scottish Rite Medical Records (note: pending)

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The reason I was calling them is that I recently submitted my application for Katie Beckett Medicaid, which, if approved, will help pick up costs of Connor’s medical care not covered by insurance. I’ve submitted 8 metric tons of paperwork, only (I hope) minus his surgery discharge papers. Those must have been accidentally thrown away. I don’t know if the board is going to want proof from the hospital (even though the neurology notes make plenty of reference to it, but it’s government after all) so as a precaution, I sent in a medical records request. None of the check off boxes described what I needed so I tried to explain what I was looking for. They don’t provide the records until they figure out what printing it will cost and then they send you a bill. Apparently the department thinks I need the whole 200 something pages and they want to charge me over $100 for it. So I called to clarify that all I need is a couple pages pertaining to the surgery and I’m not paying $100 for it. The discharge papers were like six pages for God’s sakes. That was 2.5 weeks ago. I hate CHOA and their unprofessional business ethic.

A couple companies that deserve a positive shout out so that I can offer contrast: Level 4 prosthetics. Connor recently got a cranial remolding helmet (a more detailed blog to come on that). At his initial screening, it appeared to be covered and we paid the uncovered 20 percent portion. Fast forward a few weeks and I arrive home today from one of Connor’s helmet follow-up appointments to find a denial from United Healthcare. Say what now? You want us to pay for this $3,000 helmet? So I freak and contact all his doctors and physical therapist to get proof of necessity, and then I call Level 4, who I should have called first. They’re already on the appeal for me. Good stuff. Thank you! And United Healthcare, my child is adorable in his helmet, but I assure you it’s not just a fun accessory.

The other company is AquaTots of Kennesaw. I became nervous that I would soon be doing time for homicide due to parents who think they get to save the limited dressing rooms for their swimmers, so I expressed my dissatisfaction. They were very quick to respond and remedy the situation. And now the mom who thinks it’s okay to let her children leave their cars in front of entrances where other customers can fall and hurt themselves walks the earth safely again (until she once again almost simultaneously paralyzes me and makes me change my kid on the floor, then all bets are off).

So these are my days. Doing Connor stuff, trying to get into some freelance writing and watching Roseanne reruns. I feel like I should miss working more, but I don’t. Probably because by the time I left, my teaching to do list had changed so drastically.

Sample To Do List 2005

1. Lesson plans for next week

2. Copy 2nd grade newsletter

3. pull center materials

4. choose new read aloud novel

5. try not to turn beet red, break out in hives and pass out from anxiety when undergoing mandatory teaching observations

Sample To Do List 2012

1. Some random excel sheet with random meaningless data to be submitted to someone who will never even read it, assigned 5 minutes ago, due now

2. see #1

3. see #2

4. Collect elevendy bajillion weeks worth of data so a student can receive services, but probably not

5. Attend a committee meeting

6. see #5

7. see #6

8. see #7

9. figure out what you’re teaching tomorrow. Somebody wants another excel sheet with data due in 5 minutes

10. try not to turn beet red, break out in hives and pass out from anxiety because it’s a work day

And all for less pay every year. Hey, I get it. There’s no money to be had. Just be ready to see more of this stuff on school property if you don’t want to pay people in the education profession:

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I won’t say where I took this recent photo. I might need them to hire me one day.

What I do miss is how hilarious some of those kids can be. I received texts from a former co-worker the other day. She teaches students now that I taught a couple years ago in first grade. They told her that my “shoes haunted them.” My heels were like two feet tall, and they always watched out for me because they were afraid I would topple over. If I’d known I would have based my compare/contrast lessons on heels vs. wedges.

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I also decided to start pursuing my original plan to make some of Connor’s food myself. I have the little baby blender/steamer combo, but I’ve only used it for pretty basic stuff. I decided to finally make one of the recipes from the little booklet that came with it. Hey, why not? Connor eats EVERYTHING. I mean EVERYTHING. This was the result:

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I used to be disgusted by moms drinking and eating after their kids, but the other day I found myself fighting the urge not to eat half his spaghetti and meat sauce. Then I let him drink out of my water bottle. But I also realized he has 50 percent of my DNA. That means it’s half my saliva. So that’s okay, right? Is that what these moms have known all along that I didn’t understand? Or should I just go out and buy some mom jeans now?

Despite the failure of my foray into baby chefery, I am still happy because winter is finally rolling out and warm days have come. I leave you with photos of my little Gordon Ramsay in a good mood enjoying the weather.

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Only a ball pit until it's warm enough to become a swimming pool!
Only a ball pit until it’s warm enough to become a swimming pool!

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