Second Annual “Blogging for TSC Awareness Month” Day 24
by guest blogger Sarah Gray (Atlanta, Georgia)
I have four children, who are mostly a joy and a delight, despite their collective inability to clean up anything. We spent three years dealing with miscarriages and infertility (“the dark years”) , and my husband and I are incredibly grateful to be parents to the big family we always wanted. That’s not to say we haven’t had our challenges!
Our first child arrived perfectly on her due date, and was a ridiculously easy baby. Hardly ever cried. I nursed her exclusively for five months and for a total of 9 months. We had her head x-rayed at age 2 or 3 or 4- I can’t remember much with my addled brain- because her soft spot hadn’t closed up, but it turned out to be just a weird thing. She never crawled on all 4s; she went from commando crawl to walking at 16 months. When she was older she had pretty strong sensory issues, and could not stand to have any tags in her clothes, which made it tough when I was handing things down and couldn’t figure out what size anything was. In typical oldest child fashion, she is a perfectionist and has a lot of stress, but we are surviving teenager-hood and she is finishing her sophomore year, in mostly honors classes, at a competitive private school.
Our second child was really active in utero, and partly because of that, we were shocked when she arrived and wasn’t a boy! She was a pretty typical baby, and a hilarious toddler. I nursed her exclusively for about a month, and a total of 5 or 6 months. She walked at 15 months and was clumsy- she had a perpetual bruise in the middle of her forehead. She was late to talk in sentences, but after some speech therapy caught up with a vengeance and was chided for talking too much in Kindergarten. She is a star in a local junior dance company, and I can’t believe I have a child who can dance in toe shoes, since I am so uncoordinated. She is completing 8th grade at the same school, in mostly honors classes and on honor roll.
Our third delivery was really fun because we had the “It’s a boy!” moment when he came out peeing all over like a loose garden hose. I nursed him for about 4 months maybe? He was a great baby; walked at 17 months just before we were going to start worrying. He had sensory issues that we noticed from about age 1: he wouldn’t eat frosting or ice cream, didn’t like finger foods that made his hands dirty, and as a toddler wouldn’t walk on bark playgrounds with sandals on. At age 4 he was flagged for OT in preschool. In first grade we had him evaluated, and he was shown to have many deficits which I can’t really describe, but I remember when she blindfolded him and held his head he got really uncomfortable. He loved OT, but after 3 years of trying to make his hands stronger so he could write legibly and without pain, I gave up and asked his teachers to let him type his assignments. He’s finishing 6th grade at the same school as his sisters, doing very well academically, but has OCD-like tics like playing with his fingernails, and still doesn’t eat frosting or ice cream! He plays basketball all 4 seasons of the year.
Number four is an adorable, somewhat spoiled youngest child- the only one with light hair and her daddy’s beautiful blue eyes. I got really sick when she was 2 months old and had to quit nursing cold turkey- ouch. She has extremely pale skin, and was the earliest walker of the 4- 14 months!! Someone said, “well, that’s OK”, and I said, “Are you kidding? She’s a prodigy!” At the end of Kindergarten, her teacher suggested that we hold her back, so we moved her to the school her sisters went to so she could go to pre-first and catch up a little. Later that year we suspected Dyslexia or some learning issue and had her evaluated, and she is on the lower side of the ADD spectrum, and has some visual processing issues. She is obsessed with cats, and is very, very social. One of her 2 “BFF’s” has cerebral palsy and uses a walker.
So which one has TS? Just one of them. I know I cheated because I left out the seizures and skin issues, but I was trying to make a point, which is hard to articulate. I guess I am trying to say, clumsily, that every child is his/her own wonderful, amazing self, with abilities and flaws, with strengths and weaknesses, and TS may be something that they have, but TS is not who they are.
You were sort of close. Atlanta froze over creating a hell of sorts yesterday when Rep. Allen Peake dropped the bill HB 885 Haleigh’s Hope, named for Haleigh Cox, diagnosed with Lennox-Gastaut syndrome, who is still in the hospital. It now needs to go through committee in the house and if it passes, then get passed to the senate, and at that point will go to Governor Deal to be signed. Some basic details of the current version are:
The bill will be tightly restricted and very regulated, managed by a doctor, administered orally in oil or capsule form. Seizure disorders have been added to an existing law that includes cancer and glaucoma. (A previous 1980 law had allowed for controlled use for cancer and glaucoma, but due to stipulations on how it could be obtained, never actually benefitted anyone because they couldn’t get it.)
I’m very excited to see progress being made that could potentially benefit Connor and so many others. I’m anxious to find out the nitty gritty on exactly how and when we will be able to obtain it if passed.
Of course, this bill is met with controversy, and I don’t even mean the anti-any legalization whatsoever groups. People who want to treat medical conditions not expressly named in this bill are expressing their dismay. Another point of contention is the limited allowance of THC-where exactly we stand on that is unclear. The CBD oils are very high in CBD with very low THC and have great medicinal value. Since THC is the psychoactive component, this aspect gives great comfort to people who would otherwise oppose it. However, THC also has medicinal benefits. Some of the people being treated with CBD oil are supplementing with THC when the CBD oil alone is not enough. I don’t want to get too technical because this has been a learn-as I-go-along type of experience, and I do not want to unintentionally spread misinformation.
But this is a start. I’m hoping we are headed toward access to all components that could help my child. If you are dealing with a medical issue that would benefit from cannabis, I highly recommend you contact your legislators with your story. I hope we are on a path to this being an option for everyone that needs it. Georgia is an exceptionally conservative state that just let adults make the choice to buy alcohol on Sundays and cannabis has been demonized incorrectly for decades. Miracles don’t happen overnight, even if they should. Getting this far required the persistence of some incredible parents that knocked on doors at the capitol and wouldn’t take no for an answer.
Atlanta’s Snowmageddon (Snowpocalypse? Can’t decide) that hit yesterday and had kids and teachers stuck at school and on buses, people sleeping in Home Depots, shelters, gas stations, strangers’ homes and in their cars on highways, while other people had their 20 minute commutes turn to nine hours only to ditch their cars and trek home on foot dominated the news. However, there was a front-page story about the bill in the Atlanta Journal & Constitution that continued to page A9 featuring none other than the little man himself.
I can’t believe Christmas is over already. Seems like it was Halloween a week ago. Connor had a good Christmas, despite some not so fantastic developments beforehand.
I blogged previously about his bout with bronchitis and I mentioned that instead of an increase in seizures, which can happen in times of illness, he had a major decrease. Turns out many other parents have experienced this when illness causes their child to stop eating much. Hopefully, that’s a sign that the ketogenic diet will work for him. Did I say ketogenic and not modified Atkins diet? Yes, you read that correctly and I’ll come back to that.
Turns out, a week and a half almost seizure free wasn’t worth it because once he recovered and started eating again, they came back with a vengeance. They were longer, rougher and he was wobbly for a bit afterwards. His seizures for the last several months have topped out at 30 seconds. Now they were lasting two minutes. And they looked…odd. I sent a video to his neurologist who called me with the %&*# news that Connor’s seizures had morphed into tonic-clonic (grand mal) seizures. Now, I knew they were rougher than the partials we have always dealt with, but you can read descriptions all day long of seizure activity and it still may not look exactly as expected. So they were rougher, but still not as rough as the grand mals I envisioned. I was shocked and not shocked at the same time.
So damn. A new seizure type. Common in TSC, but we had been lucky to go so long without that turn of events considering Connor’s seizures started at birth. Until now, other than partials, his only other confirmed seizure type was infantile spasms. I have sometimes suspected absence seizures, but those are tough to peg.
Shortly before this development, his neuro had changed his mind about the recommended course of action. As I mentioned in another post, we were trying to get him into the Children’s Healthcare of Atlanta at Scottish Rite or Egleston ketogenic diet clinic for consultation regarding modified Atkins and seizure control. They couldn’t get us in until March, four months out from when we sent his records over. It took a month for them to even make the appointment, and our neuro was quite perturbed that after a month of trying to get started we had gotten nowhere and had three more months to wait. He did not say this, but my guess is that he was on board with MAD when he thought we’d be able to test out the efficacy quickly. Now, that we are facing several more weeks of seizures, I suppose he wants to take a more hardline approach. With the appearance of tonic-clinics, I’m very much on board now, whereas before — I was NOT thrilled with the idea of keto.
So we have continued our efforts to get in earlier at CHOA and they also referred us to Johns Hopkins and UAB in Birmingham, which also has a TSC clinic. Johns Hopkins also can’t get us in until March. So far UAB is the winner with a date of Feb. 4. So unless we get a miracle at CHOA, we will drive two hours to Alabama, which is preferable to flying to Baltimore.
In the meantime, we have upped his vigabatrin, something we were trying to avoid. His seizures shortened again and were less severe, though they still leave him wobbly. Most days he’s had one. Until two days ago when he had five. Yesterday he had one that left his right arm almost useless for 30 minutes after.
But on a happier note, Connor sure cleaned up at Christmas. We opened gifts at home in the morning with Chris’ parents who were in town, then headed to my parents for the afternoon and dinner, then stopped by Chris’ brother’s house where Connor went hog wild with his 10-year-old cousin Cody and their dog.
We can now start a family band, hopefully less annoying than Laughing Pizza, with Connor’s new keyboard, drum and xylophone. I continue to live vicariously through him by getting him a tent for his playroom (I can’t wait until he’s old enough for the Power Wheels I never got in the 80s). One of the gifts my parents gave him is the rideable airplane from Cars. He likes it until he accidentally triggers the mechanism that makes it light up and make noise. He takes off like a bat out of hell, so I suppose I will remove the batteries for the time being so he can play with it without fear of being eaten or chopped up or whatever it is he’s afraid of. He otherwise adores spinning the propeller.
The Christmas gift exchange between Chris and me was rather perilous…for me. Chris is not a “stuff” person. If it were up to him, we’d have a lot more bare square footage in this house. He always makes a list, and I always feel compelled to find at least one thing not on the list. However, I’ve completed his collections (that I started) of Chicago sports team Mr. Potato Heads and garden gnomes. I knew he wanted the Lego Rockefeller Center for his office, so score! An off-list item. Except when I got home, I made the mistake of asking for the updated Christmas list since I had only looked at his November birthday list. Guess what he had added? Dammit. So I gave it a shot by picking him up a button-up shirt at Belk. I stuck to his beloved Izod, but veered from his color palette. I knew there was a 95 percent chance of exchange. Mine’s on the left, his exchange is on the right.
For me he did a good job with three necklaces he picked out on his own, in addition to some Loft clothes I picked. He also got silly with this, which surprised me because my excessive mug collection drives him bonkers.
He also picked up a cow chip clip that moos loudly, as I am obsessed with black and white cows and hold to a belief that if I can get it out of the pantry with no one knowing, the calories don’t count. Massive backfire on his part. The thing is so sensitive, that even after being buried in drawer, open the fridge — MOOOOOOO!. Pour some milk — MOOOOOOOO! Turn on the sink — MOOOOOOOO! Then on New Year’s Eve it went completely batsh** and wouldn’t stop mooing even when we were sitting on the couch partying hard with VH1’s Happy Endings marathon surrounded by laundry (jealous?) I was upstairs when I finally heard Chris lose it and yell, SHUT UP! I heard a drawer being yanked open, so I rushed down to save my cow from possible obliteration.
I’m also thrilled to say we made it through all of 2013 without one hospitalization! Since Connor will be admitted in order to start the keto diet, we will not be able to say that of 2014. 2012 gave us five weeks in NICU, a brain surgery and an in-patient VEEG. Here’s hoping we all have a medically uneventful year.
One last thing — please keep in your thoughts that one of our newer TSC families entered our world of seizures last night and had to welcome 2014 in the ER. I’m hopeful they will quickly find seizure control. He’s doing well I understand.
I was contacted by Dave Terpening Insurance Company to be part of their “I Was Thankful for Insurance When…” post on their blog. I love any opportunity to get the word out on TSC so check it out here.
If you are wondering where the biggest lovers of Christmas — or at least of Christmas inflatables are located — they are here, at Peachtree Dunwoody and Winall Downs. I don’t know how the neighbors feel about them, but I looooove this house. And I have it on authority from some commuters, that it’s a royal pain in the butt, but for me, it’s absurdly fantastic. I have no idea how many inflatables there are, but several of them move. When we went by this year, several cars were stopped in front checking it out. And better yet, the people who put this up direct attention toward charity. It was drizzly the day we went by so the information sheathed in plastic that they had placed on a table at the foot of the driveway was covered in drops, but a quick Google search led me to the recipient of the donations, Genesis Shelter, a group that works with homeless infants and their families.
It appears our new neighborhood is dominated by white-light people. So I needed a little color in my life. And I got it:
Now here are some photos I took in 2009. My, they’ve grown!
And a little update — Connor is feeling much better and is back to tearing the house apart and attempting death-defying jumps off the back of the couch.
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Last night Connor cruised the furniture for the first time! He took three side steps to move down the couch, and a little later, got up and did five in a row. I’m itching for him to walk! My back needs it for one. All his doctors concur that he’s right around the 27-pound mark, but apparently they all buy same defective brand of scale because I can tell you he weighs 80. There will be so many more places that we can go to fill our days. I mean, we have fun at the zoo and Tanglewood Farms, but it’s a bit of a work out. A few more months and I’ll be much more excited to receive invites to bouncy house parties because I won’t find myself facedown suffocating in the corner of a castle, being trampled by toddlers. We’ll probably go broke from me buying season passes to everything in a 50-mile radius.
Last week, Chris had to go to NYC for the day for a business meeting. He happened to stumble upon the taping of the Today Show — the last hour with Kathie and Hoda. They pre-tape Friday’s show on Thursday, and that is the episode you can see him wandering around the back, texting me to ask if he’s on TV and poking his head in to see what’s going on. It’s pretty funny. Here are some stills (yellow tie and briefcase strap criss-crossed):
We had a busy weekend. Saturday, Chris and I made the day trip to Birmingham for the TS Alliance regional conference. I took this picture at the Alabama welcome center because it gave me the warm fuzzies.
We got to hear about the latest in clinical studies, surgical techniques and dealing with schools and IEPs — having been on the other side of IEPs as a regular ed teacher, I dread the possibility Connor could need an IEP. Let’s say I’m just a little jaded in that area, having seen first hand what happens when the law requires schools to provide a “free and appropriate education” but doesn’t provide funding or support. Fingers crossed he won’t, but we have to be prepared for the possibilities. The reality is he will most likely start school with one, given his delays. It’s unlikely by pre-k that I won’t feel he needs one, but I can still hope that won’t always be the case. Only time will tell.
My parents got to spend the whole day with Connor from waking up until almost bed time. Everyone survived so I’m booking a trip to the Caribbean.
On Sunday, we met up with the Cruz’s and the Weathersby’s for Boo at the Zoo. We had two pirates, a monkey and a cow. The cow was SUPPOSED to be Cookie Monster, but the manufacturer and I have a serious difference of opinion on what constitutes a 2T. We had to make a last minute dash to Target on the way for a new costume, where we very nearly added a third pirate to our crew.
I wasn’t really sure how the zoo would go with Connor, being that he doesn’t walk yet, and while he loves animals, I wasn’t confident that the distance between him and the zoo animals would intrigue him. For the most part I was right. But the one place I thought he’d be least interested was one of the best. He loved the aviary because every few minutes the birds would all swoop the enclosure together, which he found hilarious as they whirred past his head. He perked up again at the petting zoo, but getting him to look off into the distance to spot the gorillas and giraffes just wasn’t happening.
Zoo Atlanta also put up a tent with a costumed dj, furry dancing animals and loud music. Babies first rave.
This is what happens when you want a picture of all four boys together:
Afterward we picked up food and went back to eat at the Cruz’s where Connor continued his doggy guilt trip on us by expressing his extreme delight over their dog Bacchus. And it was super adorable when David, who is one day older and fully mobile, got down on his knees to crawl along with Connor.
I am extending the deadline to enter the giveaway for the four FREE online speech therapy sessions. Enter here. There is no obligation beyond the four free sessions.
The last couple weeks have been rather exhausting in good ways and bad ways. Good = trip to Boston. Bad = corrupt housing market.
Might I start by saying I hate property appraisers? I think I said that in my last post. It is still true. Despite the fact the houses by the same builder with the same floor plan have recently sold around the $200k within walking distance, our appraisal at $185,000, $20k below the agreed upon sale price will stand. We were already taking a hit from what was paid. And despite our complete makeover of the lawn from dirt to gorgeous grass, the addition of granite in the bathrooms, a thorough de-brassing of fixtures, a new water heater and a new roof, it’s still worth $25k less than it was appraised for in 2007. So dear, dear appraisers, yes, we all know you were oh so shady in your role (I say role, as banks and irresponsible buyers should not go blameless) in helping destroy our economy, and I’m so glad that you can continue to screw up people’s lives by swinging to other end of the spectrum and undervaluing everyone’s properties, as you once over valued them to line your pockets. I despise you and your industry. You have undervalued our house and taken money from us that should be going towards my child’s needs. I wish upon you a lousy life.
Yes, we are going ahead with the move. It will hurt in the short term, but is best for the long-term. We had to heap much fertilizer on our money tree in the backyard to make it possible. Closing is in two weeks.
In brighter news, Connor is crawling like a fiend. He’s truly my child as he keeps making a move for the kitchen island wine rack and tries to steal one of my bottles. I couldn’t be prouder. He also knows that I have toys to sell stashed in the laundry room, and despite the nine kajillion toys strewn about the house, he wants the ones in the laundry room. Emma has nearly lost her tail twice in his deadly jaws. I’m desperately trying to make him understand that bathrooms are grody mcnasty and that he should not follow us in there.
We went to Boston last week for his third visit as part of the TSC study. He also had his annual MRI at Boston Children’s. Everything went smoothly, and I can see why Michael Jackson was hooked on propofol after an extensive period of time trying to wake Connor — not in a scary way, he just really wanted to keep sleeping. It’s waaaaaay better than my melatonin. We haven’t gotten the results yet. Hoping for no growth, of course.
Connor’s veins continue to be elusive, proving that it isn’t just Atlanta that can’t get a vein in this kid. He always leaves looking like a retired pin cushion.
We’ve pretty much walked all over Boston at this point, so we just revisited some favorite areas.
I love going to Boston. I actually think I could live there in spite of the cold. The only negative aspect of the trip was the idiotic TSA. I’ve actually been feeling more kindly toward this waste-of-taxpayer-money organization as having a kid has miraculously made flying easier in a way. We get to skip the security line in Atlanta, they do a quick, problem-free scan of his milk, food and meds as they are oversized liquids and we get to board first. I even get to bypass the full body scanner and walk through problem free. But this time, coming home, my sixth flight with Connor, suddenly things change. They pull his diaper bag as usual due to the liquids, but this time, because of them, she tells me one of his parents must submit to a full-body pat down, as well as have their personal bag searched. Chris is already on the bench putting his shoes on, so in complete surprise, I begrudgingly volunteer to do so. Two questions: 1. What the hell does having oversized baby liquids have to do with arbitrarily patting me down and searching my purse? 2. What is the point of letting the parents choose? If we are indeed carrying a bomb, obviously the one who isn’t wired up is going to volunteer. She informs me that if I get all his stuff in 4 oz containers, I can avoid this. Hey pharmacist, I’m gonna need all Connor’s meds in a series of 4 oz bottles, please, and make it snappy! I inform her that I have flown with him six times and this is a first. No response. So apparently bottles of Enfagrow in your bag = right of government agency to stick their hands up your crotch. And they wonder why we don’t thank them for their service to this country. That and the fact that they’ve never stopped an attempted terrorist attack. That’s the job of the other passengers on the plane.
Anyway, our plan to try name brand seizure meds in hopes of better control did not work. We are now weaning off Trileptal and moving on to Onfi. His seizures have been increasing, and though they are short and he recovers quickly, he drops suddenly. He’s face planted on the floor three times now. We have to stop these before he walks. Please let Onfi be the one.
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Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.