We’re all stuck in the house surrounded by tornado warnings. I was just going over our tornado safety plans with my mom via text, but we found ourselves at an impasse regarding certain details. Stick baby in the dryer-yes. With the cats? –disagreement as that would require the dryer door to be shut. I guess I could put the cats in the washer instead… What can I say? I love my cats. Well, I love one of them. The other is about on my last nerve with her puking on my bed and tearing up our couch. My intense favoritism of one cat over the other does not bode well for a second child.
Did you know that OCD can cause concussions? I didn’t either, until this week. The other day my husband was cleaning up around the house because…because it had been five minutes since the last time he cleaned up around the house. He bent down to pick up one of Connor’s toys that had rolled against the wall under a window. He misjudged his distance from the sill and bent down full speed to pick up the ball, smashing his head into the sill, resulting in a mild concussion, and a dent in our windowsill. What with his bad knee, achy back, and head injury, I can’t even give him a playful smack anymore, which is challenging, because I have the compulsion to smack him quite frequently. (Editor’s note: just heard him on the phone assuring someone that he’s ok. I should probably include details like that. Between the blog and Facebook, I’m forever making him explain these kinds of things. “No, no. She didn’t mean that the oven LITERALLY blew up.”)
I’ve been sleeping really well lately because I started taking melatonin before I go to bed. I sleep more deeply and wake less frequently. It also helps to lessen one of my OCD areas of focus that I affectionately refer to as “Is Connor breathing so I can go to bed?” Here is my typical “Is Connor breathing so I can go to bed?” routine.
Watch chest rise and fall.
Listen for sound of breathing.
Hold hand under his nose to feel exhaled air.
Place hand on chest to feel rise and fall.
Put hand under nose again.
Lightly touch finger to lips to see if they open.
Lean as far over the rail as possible to reassure myself that I did really hear him breathing.
Brush my hair lightly over his face so that he stirs just a little bit, without waking.
Feel comforted that although I possibly hallucinated my success with 1-7, surely there is no way I hallucinated number 8 and for him to move, he, unquestionably, must be breathing.
If melatonin is kicking in, it’s time for bed. If not, repeat of routine optional.
Does anyone else have a nutty perfectly reasonable routine like this?
(Please don’t forget to click on Top Mommy Blogs to the right!)
My goal is to blog 2-3 times a week, but clearly that has not been happening lately. Our weekly schedule has gotten a whole lot busier. We’re really trying to amp up our time we spend with Connor working on his physical therapy. He’s finally sitting independently! He even retired his bathtub lounge chair and sits up like a big boy for bath time. He also had a checkup at the pediatrician and she recommended giving him solids three times a day. I may have let her assume I had stuck with her previous recommendation to go up to twice a day…
Look, it’s not that I don’t want to feed my child, but for the love of God, when she said three times a day, I almost asked her if I could just take a bullet to the head instead. When Connor started solids he was pretty cooperative, but as time went on, he decided it was fun to swing his head around vigorously while we desperately try to catch his mouth. Sometimes he seemed to think this was funny. The thing is, he doesn’t complain when the food is in his mouth, he just wants to make a game out of letting us put it in. Meal time stretched into oblivion. But I’m happy to say that while getting three solids in EVERY day has proved to be elusive, we are consistently getting him two, and once he realized we weren’t giving up, he started to become more cooperative. Sometimes, he chows down in a matter of minutes. Especially prunes. Hmmm.
We’ve added a few other things to our weekly schedule as well.
Fri-Mommy lies on the floor exhausted letting baby beat her about the head and rip her hair out just so she won’t have to get up.
And it won’t end there….we are looking at adding occupational therapy (more as a precaution as his fine motor skills appear much more on target than gross motor), and speech therapy (you’re probably wondering what this looks like with a baby that doesn’t even talk yet. Me too. I’ll let you know.)
Lest you think I’m going to be one of those overscheduling moms that ends up on Dr. Phil, this is all intended to be therapeutic and catch up on his delays. My dream is for him to catch up to his peers so I can be a normal mommy, dump him in front of questionable television programming, and spend all my time in the Macy’s shoe department.
We had a highly amusing moment in swim class the other week. One of the baby skills is blowing bubbles in the water. I kid you not, right as the instructor has us put our mouths under to do so, Connor makes the most incredible bubbles you’ve ever seen. Just not with his mouth.
I’m hoping he will learn to give me a kiss soon. I have no idea at what age kids learn that, but the other day, I thought we were there. I leaned down to give him a kiss, and he immediately reached up, grasped my hair on both sides of my head, yanked my face down to his, and….bit my nose. Soooo, yeah. No more Walking Dead for him.
Which leads me into some thoughts I’ve been having about some of the items that dropped his scores in Boston during the cognitive testing. Apparently, he should know the word “no” by now. But I realized he really hasn’t had the opportunity to learn it. Not to sound like one of those permissive moms where anything goes, but the reality is we don’t have a lot of stuff to say no to. He’s not as mobile as the average 10 month old, so he doesn’t get into stuff he shouldn’t. And I seem to want to teach him bad habits by snorting with laughter when he’s tearing my hair out of my head or pffting food at me. I’m going to rectify this by placing the following items around him on his playmat: a rat trap, household cleaner, a stick of dynamite, matches, and a machete. Every time he goes for one of those items I will scream NO! And that will be that. I should write a parenting book. There’s more gold where that came from.
I’ve also been busy preparing for the March on Washington coming up at the end of February. I’m working on updating the Faces of TSC booklet which features Georgia families affected by TSC that we share with our representatives and senators when we meet with them. I also started contacting some of the representatives to set up our meetings. This proves to be more challenging than expected as some don’t confirm a meeting until the last minute. There goes our brilliant plan to organize meetings in advance by building. But I’m excited about it. I think this will be a really interesting experience.
(Please don’t forget to click the Top Mommy Blogs link to the right to vote for me! You can vote once every day.)
Thank you, Sylvia, for nominating me for a Blog of the Year Award. What a great chance to recognize other bloggers. Sylvia has nine, yes, NINE kids and she blogs about life in the chilly north. Her daughter Bethany is a major focus of the blog because at the age of two she was diagnosed with brain cancer, which she beat, but it left her with a lot of health issues including persistent seizures that kept her confined to the couch for many years, until she she just recently became seizure free.
I highly recommend checking out her blog, as well as my nominees for blogs I really enjoyed in 2012 (which I actually would nominate Sylvia, but do you nominate someone who nominate you? That seems weird. What does blog etiquette call for? 🙂 )
1. You Don’t Know Jack. This is a blog about another child with TSC. For him, TSC meant brain damage and autism, but there’s something to be said for finding such joy in the little things like straws (a marvelous Christmas tree decoration, I must say), and never knowing when one of his toys will apear at the bottom of your coffee cup.
2. Toemail. I once feared the feet of others. Now I follow a blog based on feet. I love travel and I love that this blog is creating a worldwide community by posting pictures from around the world.
3. My Beijing Survival Diary. I really enjoy reading this woman’s account of living in Beijing combined with travel/living advice.
4. No Points for Style. When I came across this blog, I found myself captivated reading old posts. The world of her son and pediatric mental illness is an overwhelming one, but this blogger is a great source of information.
5. Heartbeat at Our Feet. Another TSC mom blogging about balancing family, TSC, and a massive seizure dog named Denali.
6. Tiffani Goff at Home. Yep, another blog with TSC as a component. What can I say? I have a vested interest. But it’s another I enjoy following.
7. The Adoptionistas. Two women that adopted two babies from Africa. They read ALL the parenting books. I mean ALL of them. So I just get my parenting tips from them 🙂 .
Here are the rules for this award: 1 Select the blog(s) you think deserve the ‘Blog of the Year 2012’ Award
2 Write a blog post and tell us about the blog(s) you have chosen – there’s no minimum or maximum number of blogs required – and ‘present’ them with their award.
3 Please include a link back to this page Blog of the Year Award and include these ‘rules’ in your post (please don’t alter the rules or the badges!)
4 Let the blog(s) you have chosen know that you have given them this award and share the ‘rules’ with them
5 You can now also join our Facebook group – click ‘like’ on this page ‘Blog of the Year 2012’ Award Facebook group and then you can share your blog with an even wider audience
6 As a winner of the award – please add a link back to the blog that presented you with the award – and then proudly display the award on your blog and sidebar … and start collecting stars…
I love the way my blog shows me search engine terms that have led to my blog (except in the case of the person that was googling “baby torture”. I guess that will teach me to make jokes about physical therapy). A lot of people are finding my blog searching for Casey Revman Runner’s World TSC. Interestingly, my blog seems to be the first to show up in the results…but I’m guessing all of you are looking for the article, which seems hard to find, so here is the link to the article that ran in December’s Runner’s World.
I have also been nominated for Blog of the Year 2012 by a fellow blogger and, in turn, will be making my own nominations shortly 🙂 Thanks, Sylvia!
A favor to ask of everyone: please click on the Top Mommy Blogs link to the right. You don’t have to do anything once you get there, unless you want to browse other mommy blogs, but those clicks get me a higher ranking, which gets more readers to come to my blog and helps spread the word about TSC. Due to a glitch with HTML, it turns out none of my cllicks counted for the last month and I dropped off the ranking list, so please help me get back up!
Connor has now had two swimming lessons, about 30 minutes in length. He generally spends the first 26 minutes looking like, what is wrong with these freaks and why are we doing this? He spends the last four starting to warm up to the idea, and then we get out. But he doesn’t fuss or complain, not even when we dunk him. Just looks at me like I’m a world class idiot.
He’s also about to start music therapy. He responded incredibly at our initial meeting with the music therapist, so I signed him up for a weekly group class with other kids, and he will also do a weekly private session with the therapist. And the best part?! Besides the fact that he responded so well to her? She is charging less for a private session than our specialist co-pay would be if I wrangled a way to get it covered.
I”m very excited that I’ve booked my flight to DC to be part of the Walk on the Hill to get more government funding for TSC research. We’ll be making phone calls to set up the meetings with senators and reps shortly. Connor is excited to get rid of me for a couple of days so he and Daddy can get a keg. We’re also in the process of planning our next study visit to Boston at the end of March. While we’re there, we’re planning to have him seen in the Boston TSC clinic. It’s not that we’re not happy with the care he gets here in Atlanta, but we’re already being flown up by the study, so it only makes sense to have as many eyes on him as possible. Happily, we are covered by United Healthcare. I’m feeling good about UH today. Sure, we’ve had our minor aggravations, but piddly stuff. Thank you, United Healthcare, for not putting me through this, and thank you, social media, for allowing this. I’ve only ever managed to use social media to get refunds on crappy products or questionable charges, so this is quite impressive. It’s just a shame that this is starting to become the norm of how people can get anything done. You can’t be nice anymore, and that sucks. Aetna deserves the bad press. (If you don’t have time to click those links, long story short: Aetna was behaving HORRIBLY toward another TSC mom, and putting her daughter’s life at risk).
Speaking of companies that suck, Accredo Pharmacy is at the top of my s#&* list. I’ve complained about them before, here and here, in case you don’t recall. I didn’t throw their name out there then. But I’m done, and would love nothing more than for a Google search of their name to lead to my blog, especially since I discovered in an online TSC discussion group, several other people fighting with this inept facility. We encountered yet ANOTHER problem filling our prescription of vigabatrin, Connor’s most important medication, a seizure medication. Seizure medications are the kind of medications you don’t just miss a dose of. It can be serious, but this pharmacy, ACCREDO PHARMACY, shows time and time again that they have no understanding of this. Or they just don’t care because it’s a specialty drug and they know we can’t just run to CVS instead.
So this time THEY called ME to set up his refill shipment. It seemed to go smoothly. I thought things were finally flowing. Since we had over a couple weeks left, it was scheduled to come about 10 days later. They really love to ship at the last possible second, but I’m tired of arguing with them, and since everything seemed to have been cleared up with them, I thought, well this still gives a few days of safety net. Unbeknownst to me, this was not just a refill. It required a new authorization from the doctor. Now, that is THEIR responsibility to handle, but I wish I’d known because I would have seen it all coming and facilitated the refill as a precaution, as I’m well aware of the fact that this pharmacy is barely functioning. The day the meds are supposed to arrive I get a call saying they never shipped because they never got a response from the doctor. Funny how they have this problem, but when I need to get his other stuff at CVS, I never do.
And nobody ever called to tell me there was a problem. Something I could have solved by contacting our doctor, which I now did in a panic because I know how slowly these idiots move, and I know a new prescription has a turnaround time of roughly six years, even though it’s 2013 and a tweet can circle the globe in 4 seconds. The neuro nurse contacts them, provides the prescription, and then proceeds to have them remove all the incorrect contact info from their database because this whole time THEY HAVE BEEN CALLING THE WRONG PRACTICE! And guess what?! I have already corrected the phone number with them. MONTHS AGO. At this point I’ve involved an employee at the pharmaceutical company that I was put in contact with regarding previous issues I’ve had with Accredo, telling her I’m freaking out because I don’t know if it’s coming and every time I call, I get a new rep who has no clue what’s going on. So she’s doing something, and then she tells me she has someone else looking into it as well, and I continue to call and tell my story over and over to every clueless rep that answers. It’s clear that none of them undertand that it MUST SHIP TODAY. It’s Friday. It MUST come Saturday because we fly to Boston Sunday and our last dose is Monday morning. Nobody cares. By the way, when I called the next day, they STILL had the wrong number for our doctor in the database. Somehow, miraculously, it ships Friday afternoon to be delivered the next day. I don’t know if it was my pharmaceutical contact or not, but I imagine it wasn’t MY powers of persuasion. But I can’t handle these monthly Accredo meltdown days anymore. So I took to the TSC discussion group to warn people away from this place. Options are limited, but if they can, run, run away! Two other people shared their nightmare stories with me about Accredo, how one actually has run out of meds, and the other can’t get her first shipment scheduled to save her life. So I privately passed the contact info I had of the pharmaceutical person, and can only hope if enough people complain, this place will get cut off.
Connor’s neurologist plans to attempt to wean him off the vigabatrin when he turns one. If the spasms are gone, it’s done. If they aren’t, we have to stay on it. Oh please let them be gone, first of all for Connor, but also, just a little bit for my sanity, too.
Having your own Accredo issues? Please read my followup on Accredo here.
We flew to Boston so Connor could take part in a TSC study through Boston Children’s Hospital and Harvard. It helps us by potentially identifying areas in which he might be showing delays so we can intervene, and in exchange we are helping the study identify early markers of how TSC might progress. Since there is such a wide variation in how TSC presents, from people leading competely normal lives to round the clock care and everything in between, the earlier doctors can identify who might go down certain paths, the better.
I was worried about flying with a baby. Ever since 9/11, I have had a decidedly contentious relationship with TSA. Apparently I resemble p. 33 of The Big Book of Terrorists. It’s gotten better since right after 9/11 when I was one of the randomly chosen few for the arbitrary secondary search at the gate (every. single. time), I guess because I so perfectly fulfilled the role of “white girl” in a politically correct collection of humans to pat down. So I’d be chilling with Asian Dad, Black Grandmother, Hispanic Mom, and various other people wearing t-shirts that said “Just Do It: Blow up the Plane.” TSA relaxed with me after a few years and mostly only chose to arbitrarily search my bag even though I had cleared security, finally prompting me to remove my bomb-shaped luggage tag and collection of Middle East flag patches meticulously sewn all over.
Who knew a baby would make it easier?! First, we got to bypass the security line in Atlanta. When we returned our Hertz rental car at Boston Logan, they drove us to the terminal instead of making us catch the bus. Then I got to bypass the full body scanner since I was holding him (I’ve successfully avoided these ever since implementation! Score! knock on wood). We got to board early. Rather than making us choose peanuts, pretzels, or cookies, the flight attendant gave us two of everything. And finally, getting to enjoy that intense look of fear in passengers’ eyes when they see you. Pure awesomeness.
It was Connor’s first flight, and generally, he’s not a fussy baby, so we weren’t too worried. Naturally, as soon as we sat down on the plane, he whined and shrieked, until we got him to sleep. From there it was smooth sailing. On the flight back, we had a standard rough Delta landing which he loved. As we bounced and jerked, he laughed and laughed.
We arrived Sunday night (oh no, I’m sorry. It was only 4:30, it just happened to look like night already) and went to pick up our rental car from Hertz. We were upgraded to a Hyundai Elantra. Don’t get me wrong, it’s a cute sporty little car, but the key word is still little. Were we getting a moped before? No complaints though. We had a great experience with them (see above about how they drive people with kids to the terminal). I’d detail our adventures of trying to navigate the big dig and poorly lit Boston roads with tiny street signs to the Holiday Inn, but I try to keep the four letter words to a minimum in the blog.
We finally found it though, only to discover they didn’t have our reservation. Apparently, the hotel made the reservation for the day they received the request from the study, not the dates we would be there. So we were a couple months late for our reservation. Fortunately they had plenty of rooms, with windows into the interior lobby, not to the outside. Deep breath. I will not freak out that I’m going to suffocate and die in here. The study ladies were unthrilled to hear that this occurred (seemingly not the first time) and we are being reimbursed for this as well. So we enjoyed a “not bad” hotel dinner, followed by some extremely questionable eggs benedict in the morning, and to the study we went.
Unfortunately Connor had one of his eye rolling episodes during breakfast which meant he was gonna be a little bit on the tired side. They started with the EEG net on his head, a very expensive and newer version that delightfully didn’t require the glue of the standard EEG. The computer tracked his eyes while a screen flashed pictures of shapes, me and a random woman.
Then he sat on my lap at a table and they watched how he interacted with certain toys. He was given particular tasks to complete with objects, but at that point he had more eye rolls and it was sleep time. We had to cut the cognitive test short and do it based on parent report. The final part was an examination by the neurologist, who noted his slightly low tone, but otherwise thought he looked good. She was impressed that despite his surgery on the right frontal lobe, he showed no weakness on either side, which can occur.
All this took place in just under 2.5 hours and we had several hours to fill before catching our flight home. We decided to tour the campuses of our backup schools, Harvard and MIT. As we both got into our first choices, Chris into Marquette, and myself into the University of Georgia, fortunately neither of us were forced to go to these second rate institutions. Harvard does have a beautiful campus, although that does little to negate their horrendous academic reputation.
We received the assessment results within a couple days. Areas of concern: visual reception (have to look into this more, I think it means he wasn’t paying much attention to the screen with flashing pics-we’re hoping a factor in this was that he was quite tired and not really wanting to keep his head up to look at the screen), expressive language (already looking into speech therapy, since he can certainly be noisy, but isn’t yet making consonant sounds), and gross motor (already getting PT). Not really major surprises. Receptive language was a slighter delay, meaning while he seems to recognize some words, he doesn’t consistently respond to them. I definitely notice that when he’s in a good mood, he’s pretty responsive. If he’s tired or disinterested, he’s pretty good at ignoring me. Interestingly, his fine motor skills were right on target, something I already thought to be the case.
His 12 month follow up looks like it will be the last week of March. We’re extending this trip into a little family vacay. I look forward to building my positive relationship further with TSA. If they stop feeling me up permanently, maybe we can even be friends…
I have been having a lot of vivid dreams lately. I’ve had a couple in which Connor started crawling or walking, so vivid, that when I woke I felt sorely disappointed that it wasn’t real. I know he will…I’m just ready to see it. Then there was the one in which we took him to a very questionable looking children’s salon, one that looked like a candidate for Tabatha’s Salon Takeover. He was preparing to get his first haircut, but then, in true dream fashion, Chris and I were suddenly in the car driving away. In dreamworld, it was acceptable to leave him to get his haircut. But I realized I had meant to stay and now I would miss it and get no pictures, so I started to cry. Chris turns to me and says, “Well, why didn’t you tell me you wanted to stay?” “I forgot!” I replied. “You’ll get over it,” he says.
I shared this dream with Chris the next day, and when I told him that I started to cry in the dream, he laughed and said, “You’ll get over it.”
Editor’s note: When Chris read this he said, Hey! This doesn’t paint me in a good light! So I want to clarify that my subconscious merely is incorporating the fact that we both have an obnoxious sense of humor. And if you don’t immediately get up and get me a glass of water when I ask for it, I will use my blog to make you look bad.
But the weirdest dream was the one in which I ate one of his toys. It made complete sense in the dream that I would. But as soon as I was done I was racked with immense guilt. You’re probably envisioning a small toy, like a rattle or block. No. It was this:
The foot is for size comparison. I ate…a piano. It was like a cartoon with big old bite marks in it. I don’t even want to know what a therapist would say all this means.
I was looking through my bedside drawer the other night where I stash books I haven’t had a chance to read. I came across a book I had buried months ago when Connor was in the NICU. It was a collection of stories about living with TSC, and part of an information pack given to newly diagnosed families. I was too freaked out to read it then, but this time I actually flipped it open and read a few. No anxiety attack, no heart racing, no dizziness. What a difference a few months make. I can even interact in online discussion groups now. It was a long process of enter and retreat for me.
I’m impressed I haven’t felt more blah with the end of the Christmas season. There was still a bit of the letdown of putting everything away and life going back to normal, but it still went fairly smoothly. It was a bit of glum feeling for a moment tonight though, when the last house on the block (the closest one we have to a Clark Griswold) threw in the towel on the outside lights.
But in a way, Christmas is now a permanent fixture in our house, as it spelled the end of our dining room. Connor officially now has too much stuff not to dedicate a space (besides his room) to him. We pushed the table against the wall, surrendering the space to him, as he looked on smirking, sipping his Similac and pretend smoking his teething ring . He gave us a smile that said, “you held on longer than I thought you would.” He thinks it’s “charming” when we pretend to be in charge.