Category Archives: Parenting

A trip to the ER and other medical hassles.

And of the medical hassles, the ER was the most pleasant one.

Our Christmas Eve tradition for the last few years is to have family over for Christmas Eve dinner. We stuff ourselves with appetizers and leave a ton of leftover ham, mashed potatoes, pasta salad and green bean casserole. Within three minutes of our guests leaving, hardly even giving us time to complain about the bottle of wine that we opened and was hardly touched (it was one of those mondo size bottles that leaves me torn between not wasting perfectly good wine and the fear of sleeping through Christmas Day in a stupor), Connor was fussing for his iPad by the kitchen table and went down with a loud thunk. I picked him up and set him on the island, hoping for his standard forehead bruise. It’s a constant battle to keep his forehead a normal skin color, and that is why he frequently wears head protection. I realized he was bleeding and called to Chris for paper towels. One swipe and I knew we had a problem. This was deep.

We headed to the Kennestone Hospital ER where Connor received three stitches. We were in and out in just under two hours. It was impressively simple and undramatic, but I guess when you’ve already done the NICU and brain surgery, three stitches ain’t no thang. In fact, Connor had spent the entire day being royally uncooperative as far as smiling for photos, giving me the first in the waiting room with a hole in his forehead.

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Getting the stitches in was easy. Getting them out turned out to be the pain. The ER doctor informed us that while we could come back after the holiday, the wait would go back to standard long waits and suture removal is bottom priority. He recommended getting them removed at his pediatrician. I love his pediatrician. I do NOT love the office staff that stands between us. I called to make an appointment and was told that she’d have to check and see if anyone would do it on a young child’s face. “It’s just three!” I tried to persuade her. Two hours later, a nurse calls me back and says it’s okay. She transfers me to the scheduler. “Well, they don’t usually do this on kids under three. I need to check.”

“We just went through this,” I explained. “I was transferred to you by the person who got the okay.”

“I still need to check.”

WTF.

After a long hold, she comes back. “You’ll have to take him back to where you got them.” I don’t think a doctor was even consulted. It was just “office policy.”

I was pissed now. I informed her we would not be going back to the ER. I did not inform her of how wasteful of time and money this was, or what a burden this kind of crap is on the system. I asked if an urgent care would do it. She thought they would. But after careful consideration of the all the germs floating around in waiting areas and the fact that the flu is reportedly raging through Georgia, we opted to Google stitch removal and do it at home. If there were a lot, we wouldn’t, but three seemed doable, and it was actually pretty easy. So take that, idiotic office policy.

I also handled the fact that last month’s paperwork glitch regarding Connor’s Sabril (vigabatrin) prescription was apparently never resolved. Typically, if there is an issue filling this prescription, a group called SHARE works with the manufacturer to make sure prescriptions go out. I learned that this is not the case if you are marked non-compliant with the eye doctor paper work. They had sent us last month’s prescription in spite of the screwup. Thanks to the FDA, they couldn’t do it again.

You see, Connor takes a seizure med that carries some risk to peripheral vision. The FDA, when they finally got around to approving it in 2009 — 30 years after initial clinical trials — decided that if you wanted to use it, you had to have eye exams every three months. They also recommend ERGs every three months. An ERG requires Connor to be put under for 45 minutes to an hour. We stopped those a long time ago. He had one come back indicating a change. But nobody could tell us squat about what that meant, or if it was even more than a fluke. Not even all eye doctors recommend it. Some bend to the fear of the FDA and others flat out tell you it’s a waste of time and they can tell you very little with young children.

The regular eye exams (at which the eye doctors also acknowledge they can’t tell you much and it’s just an empty requirement) are very mandatory. Paperwork must be submitted to keep the meds coming. Some parents speak of obtaining waivers for these, but those waivers seem like unicorns to most of us. Something wasn’t submitted properly. Then it didn’t get fixed properly. And then it was decided by all parties (other than me) that the best option was to not give my child his seizure meds and status seizures, brain damage, even death was a better possible option than some minor impairment of his peripheral vision. The FDA is apparently well aware that one needs 20/20 vision when on a ventilator fighting for life. I did not inform the manufacturer or pharmacy that I was able to obtain some for Connor so that he was not at risk for the terrible dangers of cutting a med cold turkey. Eventually the kickass assistant at his neurologist’s office was able to fix the situation, further proving that they are the only medical office I have ever been able to count on.

Sabril was not the only source of my fun with pharmacies. I tried to refill his Onfi. When I called to do so I was informed they were out and I could fill it locally if I had the local pharmacy call to transfer it. Annoying (don’t you plan for your regulars?) but okay. I had filled it at CVS before. First I tried Walgreens because it’s closest. No pharmacy in the area had it. Then CVS. Nope. Then Kroger. Nope. I called the mail order pharmacy, Optum Rx, back and asked what was I supposed to do now.

“Well, you may have to call his neurologist and get a prescription for something else.”

Something else? Just replace his highly addictive benzo?

“I don’t understand how you just run out of something you are supposed to mail on a regular basis. I want a supervisor.”

Three people later, we were able to piece together that by “out” what they actually meant was that they could have it to me by the following Wednesday, but they didn’t have it that day (Friday). It apparently took three people to get this vital piece of information that took a major issue to a non-issue. In pissed relief, I told them that was fine.

Have I mentioned I have three different pharmacies for Connor? So much for safeguards where the pharmacist can be that extra set of eyes watching for interactions and issues. I have to get Sabril from CVS Caremark (which is great as long as the FDA stays out of it), Onfi is from Optum Rx (their motto is “At least we’re not Accredo”) and all others from a local CVS.

So now we’re stocked back up on meds. It’s 2015. Despite all the venting in this post, I think it will be a good year and I hope it will be a good year for all my friends in the epilepsy community that spent the holidays in hospitals. I will leave you with some pics of Connor’s Christmas (three times in three homes!) to cleanse the palate.

Emptying the stocking.
Emptying the stocking.

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With Aunt Donna.
With Aunt Donna.

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Checking out the turtles with Grandpa John.
Checking out the turtles with Grandpa John.

 

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We had to use Diastat for the first time today.

There is no rhyme or reason to seizures. It’s enough to make you insane. There can be good periods then bad periods with no explanation, no known triggers or med changes.

A little before 1 a.m. this morning Chris and I had an idea we were about to have a day with an unexplained seizure increase. Connor’s Emfit alerted us to a convulsive seizure a little before 1 am. He doesn’t set off the monitor every night, but when he does, we typically see seizures from 4 a.m. on. Right off the bat we knew it would be a funky night if he was having a seizure that early.

We put him in bed with us and slept until the next rough one at 4:52 a.m. Then he had another one at 5:46. Then 6:59. But shortly after, they clustered and he had four in half an hour. It was totally unlike him. We had never had to use Diastat before, which is why I think we hesitated longer than more seasoned parents would have, but we administered it at 7:30 a.m. It was an easier and smoother process than I had built it up to be in my head through all those years I had to be trained to use it as a teacher (I never actually had to administer it while working, and never could have dreamed at the time I would ever have a prescription for it in my house). For those not familiar, Diastat is an emergency med used to stop status seizures (ones that won’t stop) and clusters of seizures and is administered rectally.

Connor slept on the couch with me for two hours afterward, and amazingly, woke up perky happy and raring to go. He did have one shorter seizure shortly after waking (sleep cycles are his big trigger) but it was much shorter than the previous ones, and not long after, he was up and moving around again.

I’m so baffled by seizures and their effect. Connor had nine convulsive seizures throughout the night, required emergency meds, yet wakes up ready to antagonize the dog and terrorize the Christmas tree. But sometimes he has days where he is weak and struggling to walk or eat because of seizures we can barely see or can’t see at all.

I know many parents that believe the full moon triggers more seizures. I never gave it much thought, but last night was a full moon… Who knows? Hopefully we are done seizing for the day. Connor is currently shrieking at Paw Patrol and testing how far he can toss his milk between sips AKA being himself, so fingers crossed the rest of the day will be good.

We did finally get word that he will be starting Epidiolex in early February. I wish it was sooner, but I’m grateful we get to try it so I won’t complain. Fingers crossed it will provide relief.

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Connor gets to join an Epidiolex trial!

We’ve been waiting months for confirmation that Connor can take part in a compassionate use trial for Epidiolex. His doctor was on board, but had to submit paperwork and jump hurdles due to the absurd schedule 1 classification by the DEA. Epidiolex is a marijuana-derived pharmaceutical. It contains CBD, and no THC. As we are still fighting for medical cannabis legislation here in Georgia, Chris and I desperately wanted this legal opportunity for Connor.

I actually cried when I got the confirmation. I had no idea how much of a weight this was on my shoulders until that moment because I hardly ever cry anymore. People who have known me for a long time might think, yeah right. I used to be Queen Crybaby, crying over the stupidest little things all the time. But now, on the rare occasions I do cry, it is still over something stupid — like the death of a favorite character on Walking Dead (and unlike some people who like to spoil things instantaneously on Facebook, I STILL won’t name names here for those who are playing catch up on Netflix–oops, veered off on a pet peeve tangent. Suffice to say, the instant someone croaks, you don’t need to flippin’ post it). But I never cry over important things that I probably should. Sometimes it kind of weirds me out and I wonder if something is wrong with me. At any rate, I knew tears were a sign of how important this is to me. As you can see, I may not be able to display emotion when it comes to Connor and TSC, but I’ll sob and punch you in the face over The Walking Dead.

Epidiolex trials are exceptionally difficult to get into, and I don’t know how we got so lucky. I know so many who have tried and haven’t been accepted. This also doesn’t change the need for legislation. Epidiolex is one formulation. It is not the same thing that kids like Charlotte Figi or Haleigh Cox are using out in Colorado. They are on whole plant strains of high-CBD, low-THC oils called Charlotte’s Web and Haleigh’s Hope. Some kids are benefitting from THCa. Others are supplementing with THC when the ratios in the oils don’t hit the spot for seizure control. And it will still be years before Epidiolex is available to the general public. What I’m saying is, Epidiolex isn’t one size fits all. But we hope it will fit Connor.

We aren’t sure on the start date yet. Before he can receive his first dose, he’s required to have a screening appointment. Being the holidays, the next available appointment isn’t until Jan. 6. I was rather dismayed by that as you must keep track of the seizures for a month after that appointment, and that meant he can’t start the med until February. But he happens to have a follow up appointment on the calendar already in early December. The study coordinator is looking into whether that slot will allow enough time for the screening. That would put him on the med by early January. Fingers crossed it’s sooner rather than later.

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You can get Epidiolex in a month if your definition of a month is 210 days to years.

Connor had a 48-hour VEEG a few weeks ago. It was awesome. Instead of waiting weeks and weeks to get into CHOA, we were given the option to use a company that comes to your house and hooks everything up. No hospital! God, it was beautiful. We had received the basic results, but recently had an appointment to discuss it more in depth with his neuro. I’ve been confused in documenting his seizures recently because they often have elements of his typical complex-partials, as well as his tonic-clonics. The EEG confirmed that his CPS (which are in one area of the brain), then generalize to the rest of the brain resulting in clonic seizures. He has a couple hot spots and it seems like every EEG seems to indicates a tradeoff in which is doing the dirty work. This time they all started in the right frontal lobe in the spot where he had surgery when he was four months old. Greeeeaaat.

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This is not to say the surgery was not done well or wasn’t successful. It made a huge difference in reducing his seizure activity. That removed tuber was the reason Connor spent 37 days in NICU at birth. But sometimes the area left that surrounded the tuber can still trigger activity. This means a second surgery to remove more of that area is an option. But the doctor already knew we weren’t interested in exploring that route, not before we try medical cannabis. Connor is currently being considered for a compassionate use trial of Epidiolex, the GW pharmaceutical using extracted CBD.

We’ve been somewhat quiet about that because we already got disappointed once. Despite Rep. Sharon Cooper and Sue Rusche of National Families in Action swearing up and down during  the last Georgia legislative session that we could all get into the clinical trials WITHIN A MONTH! JUST ASK YOUR DOCTOR! it was confirmed quickly what the families already knew. That’s. Bull. Shit.

Many families never had a shot at the trials being conducted by GW. They are focusing on Dravet and LGS. Plus, there is a lot of exclusionary criteria, such as having additional diagnoses. Many tried. Many were told no. One of those children, whose mom was assured she could get it, has since tragically passed away due to a seizure. He didn’t qualify.

Connor only has a shot because there happens to be a compassionate use trial here that isn’t limited to those two diagnoses. But it is very small, very expensive for the doctor and very complicated for a doctor to take part in due to the schedule 1 status of cannabis. So, sure, you can ask your doctor to look into this, but don’t hold your breath. However, the first time we thought we could be included, we found out Connor was excluded by GW because of his age. His doctor has since submitted paperwork to expand the age requirement and we are holding our breath for it to be approved. Sooooo, a month? Let’s see, the legislative session ended in March, so it has been at least seven since we were all told a month. And Connor is damn lucky he even has a shot at taking a part in such a small trial. Cross your fingers for him and us. Everyone else can just move to a legal state, break the law or wait the years it will take for Epidiolex to hit the market (and then hope that formulation is the one that will actually help).

Realm of Caring is also about to start shipping Charlotte’s Web, the the high CBD oil, made famous by CNN’s Weed with Sanjay Gupta. So the CBD options are slowly and fantastically coming our way, but should Connor be one of the cases that requires a different ratio of THC, we will either need to move to a legal state or hope Georgia can pass legislation in 2015 that will let us get what we need. The comfort level with CBD has skyrocketed nationwide, but THC is still demonized despite the fact that it is needed to treat many medical conditions. For now, we are hopeful that Connor will be one of the patients that responds well to CBD without the need for tweaking the ratio. It also remains to be seen how shipping the oil will play out due to the legal gray areas, especially for people in states with no legislation on the books. Certain politicians and people with authority think we should all settle for their word that they won’t prosecute us here. But tell that to Angela Brown in Minnesota who was recently arrested for giving her son CBD oil.

We’ll just be gnawing our fingernails, waiting to hear about the trial. Connor’s been having more seizures at night. His Emfit monitor was malfunctioning the other night (we were advised to adjust some settings which seems to be doing the trick), and now that I’m used to having a monitor that will alert us to convulsive seizures, I couldn’t sleep knowing it wasn’t on. I tried to sleep with Connor in the guest bed, but moving him woke him up and for the next hour and 15 minutes he appeared to be on speed. We played several rounds of “Got Your Nose” Scarface style –him grabbing mine, not the other way around. The bed and my head also made for equally sufficient trampolines. I finally gave up and had to put him back in the crib where he entertained himself for at least another hour. Life with epilepsy, ya’ll.

If you are interested in putting yourself on the wait list for Charlotte’s Web, go here

 

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.








 

Seizure Hunter — The Elusive Prey

Seizures are really obvious. I couldn’t possibly miss one. We’ve all seen them on television: the fall to the floor, the violent thrashing, maybe some foaming at the mouth. Therefore, it’s really easy to keep track of them for the neurologist and make decisions about which medication is the perfect match for your situation.

Hear that? That is the sound of the collective eye rolling of the epilepsy community. Just kidding, ya’ll!

It turns out that a seizure can look like damn near anything. Eye rolling, staring, wandering, confusion, a single limb jerking, lips puckering, a split second head drop, a split second loss of muscle tone that sends a person plummeting to the floor, jackknife motions of the body, going stiff as a board, a scream…or nothing. Nothing at all. All you know is that suddenly your child went from smiling and laughing to laying his head on the floor and going to sleep, or he’s suddenly so weak that his arms give out and he smacks his head on the floor resulting in two black eyes. It’s not just seizure freedom that can be elusive, but the seizures themselves.

Was that a seizure? Was that? And what about that? Do I count that if I’m not sure? Was that one seizure or two different ones back to back? And that one? That one looked like a weird combination of tonic clonic and complex partial, so which do I mark it as on my Seizure Tracker app? Our smart phones fill with videos of suspicious behavior we share with our online support groups and doctors trying to get answers. It takes an hour to do the dishes because I turn around and look at the baby every 30 seconds to see if anything is happening. Every stoplight I turn around and squint at the baby mirror. If he has actually managed to go a few days seizure free, when one happens, I play mind games with myself about putting it in the tracker. That was a small one. Am I sure it was really a seizure? Does it count if I don’t record it?

I think the first year was the worst. Babies are weird and do weird stuff. How do I differentiate normal weird from abnormal weird? Is he discovering his hands or is he seizing? Trying to roll over or seizing? It’s even worse if it is the first child and there is no one to compare him to. It’s a little easier with a toddler. Not easy. Just easier. It is easier for me to distinguish typical behavior from anomalies, or if a movement was intentional or not. Not all the time, but enough to do the dishes in a reasonable amount of time. Or settle for a quick glance in the rear view. Sometimes I even settle for logging the seizure type as “unknown .”

And choosing just the right medication? Yes, that was another collective eye roll. We experiment, and change doses, combine two, three, maybe even more seizure medications. We try one med with great anticipation because it made another kid seizure free, only to find that it makes our kid have more. And if we find one that works, eventually he insists on growing or something else changes, and the experiment continues.

I have to accept that there are limits to what I can fix and do the best I can.

Most importantly, I finally realized that it doesn’t make me a bad parent if I don’t always know. I WILL miss seizures. I won’t know what every movement is. There won’t always be answers. There will be good days and bad days. But they will be worth it.

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Thank you to joshprovides.org for granting Connor an Emfit seizure monitor.
Thank you to joshprovides.org for granting Connor an Emfit seizure monitor for his crib.

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Connor just walked his longest distance ever!

Tuesday Connor walked his longest distance ever independently. He’s been getting better and better at walking with the emotional support of holding a hand or even just a finger, and sometimes even just knowing our hands are hovering over his shoulders is enough. We were waiting for aquatic therapy to start and walking around the pool area for practice when he suddenly let go of my hand and went on his way. His previous record was eight steps in our house. This time he walked half the the length of the Olympic pool. The lifeguard clearly thought I was insane chasing after him, hands at the ready to catch him and whisper-shrieking “Oh my God, oh my God!” As we passed him by I gasped, “He’s never walked this far before!” So then the lifeguard got excited and when Connor finally did go down he joined me in clapping and offering congratulations.

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Chris did his part to add to the family excitement Tuesday, too. He mowed the front and back yard without incident, came in, showered, changed, sat on the couch to relax and THEN got stung by a bee. It must have gotten inside at some point during the mowing process as we went in and out. But his throbbing arm is simply the price that must be paid to lord over our neighbors.

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I have also been enjoying time in the great outdoors.

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My other exercise comes from picking up after Connor. He has always enjoyed starting his day by emptying his toy tubs and pulling all the books off the shelves, but lately he’s been a little too enthusiastic about chucking his belongings behind him. Once everything is in a pile behind him, he turns around and starts chucking everything in the other direction. He is highly amused and excited by this, so I think it’s a stimming behavior.

Which leads me to my plea. While I certainly lack the degree of cleanliness OCD my husband demonstrates, I do have an obsessive need for the house to be clean when people walk in (except for his at-home therapists–I blow their mind when I’m even actually dressed). I don’t care what it looks like five minutes later…but it must be clean when guests walk in. For that reason, you MUST be on time when you come over. The protocol typically calls for a mad rush of throwing all the toys in the correct baskets within the 10-minute window before expected arrival. Until you walk in the door, I must distract Connor from his need to rectify the disgusting clean I have made. It is not always pretty. But once guests have entered and caught a glimpse of the clean floor, I can unleash the kraken.

The weekend before last we went to a social event held by the Georgia early intervention program Babies Can’t Wait. It was a bit surreal as I heard my name and looked up to see someone I hadn’t seen since high school. I had this strange moment of trying to process that intersection of someone from my past crossing into the special needs department of my life. There were the normal “how are yous” and then the awkward trying to figure which questions were okay to ask. I was thinking, “I can ask, right? That’s not weird…is it?” Over and over. She was the first to break the ice and we discussed the two rare genetic disorders that had unexpectedly altered the course of our lives. But these are the things, along with Facebook support groups, that keep the bitterness and the feeling of being targeted by life at bay. Oh, the life paths you couldn’t fathom when you were walking the halls of high school…

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