Tag Archives: Washington DC

Connor’s version of March Madness includes an MRI and sedation

So much going on this Month but we made it.

We gave him a playroom, and he acted like he'd been sentenced to Riker's.
We gave him a playroom, and he acted like he’d been sentenced to Riker’s.

We still have a child named Connor, in case my lack of blogging made you think he had packed up and run off to Borneo as revenge for us regulating his iPad time.

Let’s back up to February when we heard a loud thump followed by crying from his room. We ran in to discover that we had a Defcon 1 situation and Connor had escaped the crib. He wasn’t so much hurt as I think he was surprised by the floor, so he transitioned to the toddler bed that week. I did not expect it to go well. We moved more toys into the room, added a gate to the door and removed all potentially dangerous and/or greasy objects from his drawers. The first night he cried and yelled for two hours and I had to rock him to sleep. Not because of the bed, but because baby gates have always inspired great rage in him.

IMG_3673But after that, piece of cake. He would actually get in bed and stay there. I was shocked. I had expected him to trash the room and pass out in various spots on the floor. Instead, he stays in bed until light begins to peek through in the morning, and then he’ll either go play or drag objects into bed with him. In the beginning I’d find him passed out in a sea of pants and diapers he’d dragged from the drawers (yeah, no idea) but he has since graduated to his puzzles and trucks. The transition has been incredibly easy as long as he has his Pillow Pet dog to shine on the ceiling.

Staring into is even better than watching the ceiling.
Staring into is even better than watching the ceiling.

March was probably the busiest month we’ve ever had.

Washington D.C.

Chris and I joined other TS Alliance volunteers from around the country again this year to meet with our congressional representatives and senators on behalf of our state. I’m excited to say that the Alliance got the most signatures ever in support of the Tuberous Sclerosis Complex Research Program. Georgia Senator Johnny Isakson was one of the authors of the senate Dear Colleague letter, and in the House of Representatives from Georgia, both Rep. Hank Johnson and Rep. David Scott signed on in support again this year. We were fortunate that the meetings were set for Wednesday March 4 since a snowstorm blew in and shut down the government on Thursday. Despite the cold, Chris and I got a lot of sightseeing done. And I only busted my butt on the ice once.

Boston

IMG_3995We flew home from D.C. on a Friday, picked up Connor from my parents and flew up to Boston on Sunday morning. I had booked an early flight since this was our last trip given Connor is aging out of the TSC study and I wanted to make the most of the day. I was not aware at the time of booking that we would be losing an hour of sleep thanks to Daylight Savings. We boarded our 7:30 flight, took off, and landed right back in Atlanta 10 minutes later due to an issue with the landing gear. I was tired and disinterested in dragging a sleeping toddler off the plane so my thought was, if we gotta land on it, let’s just do it in Boston. If it meant spending the day in the airport waiting  for a flight we weren’t going, but crazily enough Delta had a plane ready immediately so off we went. Boston was still covered in several feet of snow from the big storms the previous month. Roads and sidewalks were cleared, but space was tight with the mountains of dirty snow and abandoned cups on each side of the sidewalks (because apparently trash melts too when thrown in a snowbank).

While we were there we scheduled Connor’s annual scans. He had a brain MRI and an ultrasound (the recently updated IMG_4016protocol recommends an MRI of everything, but I just couldn’t seem to get someone on the phone that would make that happen this time). Since kidney involvement is common, we prepared ourselves for the possibility that Connor would have some sort of involvement by now, even though his previous scans at birth and six months were clear. When the tech came back to take additional photos after showing the initial pictures to the doctor we were pretty sure we were right. Connor does now have signs of TSC in his kidneys–innumerable minuscule angiomyolipomas. They are not problematic or affecting his kidney function, so we will just continue to monitor for growth. Hopefully they will not ever require intervention.

Weirdly, though I prepared myself for changes in the kidneys, I did not expect any change in the brain. There is no rational reason for that, I just didn’t. Turns out that one of his SENs in the ventricle has grown from 5mm to 7mm. It does not require intervention at this time, but the doctor recommended a followup in six months to be safe, rather than waiting the usual year.

So, not the best news, but certainly not the worst, or anything too crazy for TSC.

My crowning achievement of the trip was while Connor was having his MRI. I fell asleep in the waiting room, and awoke to the nurse telling us we could come back and see him. I jumped up in a half-asleep state of confusion not realizing my leg was completely asleep. I mean absolutely 100 percent numb and unfunctional. I crashed to the floor drawing a gasp of horror from an onlooker. I tried to get up, but couldn’t. My leg could not support any weight whatsoever. I looked really cool, but seemed unhurt…until we flew home that night. Then began the first of several days of my ankle looking like this:

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But I must reiterate — I looked really cool.

Katie Beckett and IEP

Upon return I dealt with the immediate turnaround of Connor’s Katie Beckett renewal paperwork. They give you like a whopping two weeks to get it done, plus it came while we were out of town and was due when we would be gone again. Thankfully, we had an easy renewal this year (assuming we get re-approved), requiring only some basic forms and not the common 10,000 pages of therapy notes.

Then we had Connor’s first IEP meeting since he’s aging out of Babies Can’t Wait. He will begin at the special needs preschool in April, attending Monday through Friday from 8 until 12. It went pretty well. Their goals were well in line with what we were looking for. He will receive 45 minutes of OT, 45 of PT and 60 of speech a week. Plus he will continue with private speech, OT, music and aquatic.

Connor’s 3rd Birthday Party

We celebrated Connor’s construction-themed birthday a week early since we needed to be out of town for a wedding on his actual birthday. He was very accommodating in that he doesn’t know what date it is anyway and never has objections to being given trucks on any given day. Rosie the dog donned her construction gear and I even tried my hand at amateur cake making:

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A few days later Connor went to my parents and we went to Antigua, Guatemala to round out a whirlwind month…but that’s my next post. Stay tuned so I can get all Rick Steves on you.

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Rep. John Fleming of Louisiana is a perfect example of what’s wrong in D.C.

Unknown-1Representative John Fleming of the fourth district in Louisiana is extremely opposed to medical cannabis. While he does see a place for pharmaceutical versions such as GW Pharma’s Epidiolex, marijuana scare tactics appear to be a major part of his agenda and he has no interest in helping desperate parents save their seizing kids. He has no problem with dying children waiting while researchers fight through the tangle of red tape that is marijuana research and the lengthy process that is FDA clinical trials. Oh, those trials have been fast tracked and we can get into studies (sound familiar, Rep. Sharon Cooper?). Never mind that most of us can’t get into those studies. Connor doesn’t qualify with TSC, and even parents who have children with the requisite syndromes are unable to find openings. FDA fast tracking just means they shave some years off the years it will still take to approve it (Connor’s most effective med, vigabatrin, had its first clinical trials in 1979. It was approved in the States in 2009, years after other countries made it available).

Rep. Fleming is very, very worried about recreational use. Our children are nothing but Trojan Horses (his words) used by those who want full legalization for recreational purposes. He is so worried about recreational use and the fear that someone might find a way to use medical cannabis for fun, that he is willing to sacrifice the lives of sick and dying children. He is not interested in hearing our stories of our children that need it or those that are already benefitting from high CBD strains and THCA in legal states. He voted against the recent Rohrbacher amendment to prevent funding the DOJ for raiding state medical marijuana programs. In fact, if you try to tell him about your child on his Facebook page, he will delete it. He can’t have the public know who he’s hurting with his over-the-top antics.

IMG_0964It’s his Facebook page that brought him to my attention, as well as to the attention of some other parents dealing with seizure disorders. He had posted about a speech he gave on the dangers of marijuana so several of us posted on the thread. Many of our comments got deleted. Several of us are blocked from commenting further. I will say, in the interest of full disclosure, that perhaps I implied I had doubts about his abilities as a medical doctor since I came across an article about how he blocked doctors from being able to discuss the medical marijuana option with veterans because he didn’t want them exposed to an addictive, harmful substance. Yet you never see him express any concerns about the highly addictive, dangerous nature of many pharmaceuticals. Prescription pain pills are some of the most highly abused drugs, but that doesn’t concern him. But I don’t think I got deleted and banned because I might have come off as insulting (there was no swearing or name calling). I think I got deleted because I talked about my kid and about how dangerous one of his prescriptions is. (And to be clear, I am not part of the anti-pharmaceutical movement, nor do I believe that marijuana is a cure for everything or that it will work for everyone. I think pharmaceuticals have their place alongside options like cannabis. I just ask that my zip code not determine my access).

I’m not the only one. Several people who talked about their kids got deleted. Interestingly, he started debating with one of the parents–also a doctor –and did not delete or block him. However, he DID delete a link to a YouTube video that this father had made about his daughter and medical cannabis to educate the public. Interesting. Rep. Fleming is so passionate about Facebook page maintenance that he even stayed up until midnight on a Friday to edit, delete, and condescend. Yes, condescend. You may wonder why I find this particular representative so interesting when he is obviously not the only one who opposes helping our kids. Well, though I was blocked, I still found myself quite fascinated poring through his page. It became clear that his page serves no purpose but to rile people up and be divisive. It’s not even about whether I agree with his views or not; it’s that he clearly uses it as a tool of stirring discontent. Don’t get me wrong. I pretty much expect to see Obama-slamming on most GOP pages, just as there is some over-the-top Obama adoration on the pages of many democrats. But I looked over a few other pages from other parties and none gave me the same disturbing hateful feel that I got from his. I expect these pages to have opinions and criticisms. But what I found from the other ones I looked at is that I could also find positive comments about something they were involved with, or that I didn’t have to scroll far to get an idea of legislation they were involved with. Fleming, on the other hand, just seems to bitch and moan. I know his opinions, but very little of what he’s doing about it. Those posts are good and buried. I’m in no way saying he is the only one who behaves like this, but there are just too many people in Congress for me to look at all the pages. I looked at four other Republicans and four Democrats just to see if this is the norm, but saw nothing like this. All the pages are going to have rude comments from the public…the difference is that most of these other pages don’t seem as heavily moderated in that area. So when you make a point to delete and moderate heavily, you are implicitly showing support for what you leave in view.

What I found especially interesting is the way he chooses to interact as an elected official. I’m sorry, but our representatives should set an example of decorum. You are going to have rude comments on social media, and there is a line people can cross where you are well within your rights to delete. But he’s deleting to twist the story and those that get to stay, but disagree with him, get a condescending attitude the likes of which I’ve never seen.

Here are some screen shots from the medical cannabis discussion with parent of sick children. He keeps talking about legalization, though many commenters are focused on rescheduling. He’s also completely in the dark it would seem about how damaging the schedule 1 status of marijuana is on research. But he won’t be told otherwise!

This flat out lie:

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And excerpts from last weekend’s marijuana discussion in which it was necessary to talk down to and insult parents desperate to save their kids. I’d tell you to check out his page to get the full conversation, but alas he is forever editing and deleting. Who know what’s missing and edited by now.

Excerpts with one dad.

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Excerpts with another dad.

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Please keep up with developments? Really? By the way this dad is the doctor I mentioned earlier. The other dad’s response to Fleming’s endless egocentrism.

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Once again, Dr. Fleming, learn the difference between rescheduling and legalization.

And the one I take very personally because this mom has a child battling the same disorder. (Update: Since I first posted this, Rep. Fleming has removed all the comments by this mother, yet left his own responses).

IMG_1133 IMG_1134 IMG_1135 IMG_1136 IMG_1137 IMG_1138 IMG_1139 IMG_1140 IMG_1141 IMG_1142I simply must interject here…They will just GIVE US the medication if our kid is going to die? Just like that. Anybody remember Josh Hardy who made the news last March? He is seven. The pharmaceutical company denied him compassionate use. They didn’t reverse their stance until the public pressure became too overwhelming. Rep. Fleming truly lives in his own world–a world where pharmaceutical companies give people drugs when we say “pretty please with sugar on top.”
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Not one ounce of compassion in that entire thread.

For the love of God, why can this man not make the distinction between legalization and rescheduling?

Yeah, pretty sure we explained that (in now deleted comments) that this wasn’t an option for everybody and some kids will be dead before Epidiolex goes to market. Not to mention, Epidiolex is one particular formulation. It’s not necessarily the same as what some of the kids are responding to. It may work for some, but others will need whole plant medicine.

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Like I said, he loves to delete.

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So some of the parents got to stay and debate with him. I guess those of us that were deleted didn’t have anything constructive to say. So in the interest of helping others, I’m going to share some screenshots I took from other threads on different topics so that you will know what Rep. Fleming considers positive contributions to the discussion should you wish to engage without being banned. And please know that in an older thread, he has stated that cursing and name calling won’t be tolerated. But I guess that’s only if it’s about him.

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Though some who don’t know me may assume I’m targeting him because of his party, that is absolutely not the case. If he had come to my attention as a Democrat behaving in this manner–I’d say the same (I float somewhere in the middle annoyed by extremes on both ends). He’s a perfect example of what we don’t need in D.C. making decisions for people. Someone who makes it very clear that he can’t and won’t work with his colleagues unless they tow his line and won’t listen to the other side of the story. He’s there to represent his own interests. I actually found in Georgia that the bipartisan support for our kids was amazing.

But perhaps I’m being unfair. He does get his information from reputable sources.

john_fleming_screengrabPlus, Rep. Fleming has but this one request.

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Of course, don’t expect HIM to abide by it.

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He really can do it all. He gives grammar lessons.

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He’s a Biblical scholar.

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A civics professor.

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Hmmm…be a statesman…good point.
IMG_1081His response:

IMG_1082Historian.
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Economics professor.IMG_1078

He gets by with a little help from his friends.IMG_1077

I just wish he cared as much about the kids that have been born as he does the ones that are in utero.

Maybe it’s time Dr. Fleming goes home to Lousiana and focuses on his 36 Subway sandwich shops in North Louisiana.

We all have our beliefs and biases, and hey, I don’t necessarily like all the people being referenced here either, but if this is how you think a United States representative should conduct himself, you need to reassess.

 

Please check out this YouTube response some parents put together for him.

Hitting Capitol Hill in Washington, D.C.

So much excitement over the last couple weeks. Where to begin…

HB885 passed the House vote 171 to 4. It now awaits a hearing in the Senate. If you haven’t yet contacted your Georgia state senator, please do so right away. If you aren’t sure who it is, check here.

Chris and I flew up to Washington, D.C. last week to meet with our representatives about the continuation of funding for the Tuberous Sclerosis Complex Research Program (TSCRP) which is part of the Congressionally Directed Medical Research Program (CDMRP) in the Department of Defense (DOD). Yes, I am drowning in a sea of acronyms. Quick quiz: how many of these acronyms do you know?

AML, TSC, SEGA, LAM, SEN, CBD, CW, FDA, THC, DEA, RoC, VNS, CPS, TC, GW, IND, LGS, HIPP, KB, CHOA, PT, SLP, MT-BC, MAD

(Answers: angiomyolipoma, tuberous sclerosis complex, subependymal giant cell astrocytoma, lymphangioleiomyomatosis, subependymal nodules, cannabidiol, Charlotte’s Webb, Food and Drug Administration, Tetrahydrocannabinol, Drug Enforcement Agency, Realm of Caring, vagus nerve stimulator, complex-partial seizures, tonic-clonics, this is the name of a pharma company (I actually have no idea what GW stands for), investigational new drug, lennox-gastaut syndrome, Health Insurance Premium Payment Program, Katie Beckett, Children’s Healthcare of Atlanta, physical therapy, speech-language pathologist, music therapist-board certified, modified Atkins diet).

That fact that I know those in no way makes me smart. It just means I can do even less math than before because I’ve had to drop everything number-related dating back to second grade to make room for it all. To be honest, that only equates to a couple of years. It was all downhill from fourth. Also, don’t ask me to pronounce most of them.

Now back to DC…(see how I did that?) Volunteers flew in from all over the country and we swarmed the Hill in our sexy blue jackets. There aren’t words for how excited I was to discover these had thumb holes. I love thumb holes.

Fellow TSC mom Reiko and my hubby Chris helped me hit all the Georgia congressional offices.
Fellow TSC mom Reiko and my hubby Chris helped me hit all the Georgia congressional offices.

We secured promises of support from the offices of John Lewis, Hank Johnson and David Scott. The meeting with David Scott was my favorite as I had no expectation that we’d be promised support on the spot like that, and the staff member we met with immediately began asking questions about what was going on back in Georgia with HB885 when we mentioned TSC’s link to seizures. It was awesome to know they were talking up there. Don’t worry, fearless trainers from the previous evening’s dinner, Reiko got us right back on topic 🙂

Chris and I even got some time the first day to explore so we went to Ford’s Theatre and the house where Lincoln died. His blood-stained pillow and the tiny gun that killed him are on display. The balcony is preserved as it was, and I was actually surprised to learn that it is a working theater. We did some more walking around including a photo op at the White House where our phones died simultaneously only letting us each get one shot. I don’t want one more stupid iPhone model coming out until they can make a battery that lasts more than five minutes.

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The last night we were there was the Volunteer Recognition Dinner. Four people were awarded a Franny, the volunteer of the year award for 2013. Chris had broken down and told me he nominated me a couple weeks prior — so very sweet — but that did nothing for my slow processing as one of the winners was described as having a son Connor’s age, a blog with the same amount of hits and followers as mine and involved in similar activities. I thought, man, who is this person leading such a similar life? Oh it was ME! ME!

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Then, like a jerk, I forgot to thank Chris a la Hilary Swank and Sean Penn who ended up divorced after their Oscar acceptance speech snubs of their significant others. He swears it doesn’t matter, but just in case: THANK YOU, MY AWESOME HUSBAND!

All the winners.

Well, if you haven’t read it yet, check out my post from Sunday here. It is now my most read and shared post of all time. I’m thrilled to help get the message out on the potential benefits of medical cannabis. Though I can’t help but wonder why you all aren’t as intrigued when I blog about my repetitive dreams of my teeth falling out or weight loss powder shakes…

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With Chris Hawkey.
With Chris Hawkey.
With CEO and President of the TS Alliance Kari Rosbeck.
With CEO and President of the TS Alliance Kari Rosbeck.
Grandma and Grandpa took Connor to aquatic therapy while we were gone.
Grandma and Grandpa took Connor to aquatic therapy while we were gone. We did it! Four whole nights away! Guess we’re ready for the islands…

Please check out my latest post at Mommy Hot Spot.

Finding Family Through TSC

Day 8 of Guest Blogging for TSC Awareness Month

By guest blogger Karren Nelson  (Brunswick, Ohio)

feb3_2011My son Joel was born on February 3, 2011. After struggling for a couple years with infertility, my husband and I felt extremely blessed when we were finally able to hold our precious miracle in our arms! Doctors did routine exams on Joel after he was born. They told us he was healthy, but they did notice a long white patch (almost looked like a blister) on his right arm. They had no idea what it was or what caused it, so we were sent to a dermatologist when he was around three months old. By the time we saw the dermatologist, the white patch on his arm had changed in appearance and texture. The dermatologist told us it was linear epidermal nevus–just a cosmetic thing and we had nothing to worry about. We went home that night feeling relieved.

Months later, when Joel was seven months old, he began doing a strange head nodding thing. He would slowly drop his head and then quickly jerk it back up. The first time he did it we weren’t sure what to think; we had never seen anything like it before. When it continued the following day we knew we needed to see a doctor. We quickly scheduled an appointment with his pediatrician, and we tried our best to video record the heading nodding episodes to show the doctor. The pediatrician watched the video but almost sent us home, telling us he didn’t think we had anything to worry about. I knew in my heart there was something wrong, so I spoke up and questioned whether it could be somehow related to the white patch on Joel’s right arm. He was honest and said he had no idea, but he would call the dermatologist to discuss it. The next april2013eegmorning the pediatrician called me and said we needed to see a neurologist because Joel needed to have an EEG as soon as possible.

An hour after Joel’s EEG we were able to see the neurologist to discuss the results. The neurologist walked in the room, sat down and said, “The EEG showed abnormal activity which we believe is seizures, mostly on the left side of his brain, so we would like to do further testing to rule out a condition known as tuberous sclerosis complex, which can cause tumors to grow on the brain.” We had no idea what she was talking about. We had never heard of TSC before that day. I honestly can’t even remember anything else that was discussed during that appointment… All I could hear was my baby might have tumors on his brain!

The next step was for Joel to have a sedated MRI. We were terrified. I couldn’t handle being in the room and seeing Joel be sedated so Jeremy stayed by his side. When he walked out with tears in his eyes, I lost it. He told me he never wanted me to see that. It was the hardest thing he ever had to do. The nurses told us to go have lunch while we waited. We walked to the cafeteria but we could barely eat anything. We kept looking at the clock, wishing time would speed up so we could see our baby again.

When we finally received the MRI results we were devastated. The MRI showed Joel has tubers on his brain. Further testing also revealed he has rhabdomyomas on his heart. The good news is we were able to control his seizures very quickly after trying only one medication.

teamjoel_seattlewalk2012The hardest part of this whole thing was that we were miles away from any sort of family support system. We were living in Washington state for my husband’s career with the Navy. Jeremy’s unit was supportive, but we still felt so alone. During our first Step Forward To Cure TSC walk we realized we were wrong–we did have a support system there. A group of military friends came out to walk with us so we wouldn’t have to walk alone. That meant more to us than any dollar we were able to raise! I still get emotional talking about it!!

These days Joel is doing well. We have to monitor his weight very closely though, because if he gains too much weight, he starts having staring spells and we have to increase his dosage of medication. We are also watching his developmental growth very closely because TS can cause delays. He is in a grey area, right on the border of having delays in certain areas, so I’m constantly fighting with early intervention services to get Joel the help he needs. It’s frustrates me that we have to wait until he is extremely delayed to get help. You would think it would make more sense to be proactive with speech and occupational therapies BEFORE he is too far behind!

We recently moved to Ohio to be near my husband’s family. Moving here has been great because we are able to see a TS specialist. It’s amazing to be able to talk to a doctor that actually understands the condition and everything that comes along with it!

In February I had the amazing opportunity to join the TS Alliance for March the Hill. A very special lady named Dee told me that every time the Alliance gets together it’s like a big family reunion… She couldn’t have been more right! Everyone was so welcoming and instantly supportive. I don’t know how to explain in words how it felt to be surrounded by people that understand what we’re dealing with. I’m counting the days until we can all get together again though–I can’t wait to see everyone at the next “family reunion!” 🙂

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Please check out Karren’s blog at http://www.nelsonfamily2008.blogspot.com

A quick and easy favor to ask…

April 15 is approaching and that is the deadline for your representative to sign the Dear Colleague letter to fund the Tuberous Sclerosis Complex Research Program. And that’s pretty much all you have to say…that as one of their constituents, you want them to sign ASAP.  If you suffer from, or know someone who suffers from it, you can personalize it. If your only experience is through this blog, please feel free to share about Connor. This is my most recent follow up to my representative. It was quick and easy to send:

Dear Representative Price,
I’m writing to urge you to sign the Dear Colleague letter to fund the Tuberous Sclerosis Complex Research Program. The deadline is April 15. This research doesn’t just help those afflicted with TSC. It also helps those with traumatic brain injury (which is why this is funded by the DoD), epilepsy, autism, many cancers, diabetes etc. In February, I met with you, along with two other constituents, Reiko Donato and Wendi Scheck, to urge you to sign this. We also shared letters and personal stories with you from several other constituents who are also dealing with this genetic disorder that causes benign tumors to grow on the organs. We are counting on you to represent our needs in Washington. We are eagerly watching the growing list of signers, hoping to see your name appear.

Thank you,

Not sure who your rep is? Look here. Then just go to their site to get their e-mail!

Thank you for your support!Image

And then I told Barack, “Look! This is how we’re gonna do this! End of story!”

Back-to-back trips = no blogging for a couple weeks. I’m not one of those travelers that’s motivated enough to lug around a laptop, much less add one more item to the list of things TSA can harass me about. I’m already getting crazy with secret 4-5 oz bottles of*gasp* liquid! On February 26 I caught an early morning flight to DC to join other staff and volunteers of the TS Alliance for training and meetings with representatives and senators. Little did I know that of the four flights I would have over the next couple weeks, this would by far be the best one. It was almost empty and everyone could have their own row. I was traveling with Wendi, and she’s one of those social types that actually engage total strangers in conversation (I’m trying, okay!?). We began talking to a guy that, quite by fluke of another medical issue, had discovered that both his daughters had a health issue related to a faulty gene as well. Theirs is quite different though. I can’t remember what it was called, but basically they are lacking the ability to create an enzyme that creates a protective coating of organs such as the lungs and liver. So although they don’t have any current health issues, the basic drinking and smoking that other people may partake in casually, is a whole different ball game for them. They are at a very high risk for cancer because of this. They are young now, but that’s a lot of pressure as they get older. Those teen and college years are going to be awfully stressful for those parents…

Red velvet, baby!
Red velvet, baby!

We arrived at the Melrose Hotel with plenty of time to spare before training, so we went strolling through Georgetown and stopped for lunch, where I categorically deny having any wine. We also happened by DC Cupcakes of reality show fame. Cute cupcakes, but honestly, I think they were from the day before. Apparently the sisters on the show (which I really don’t watch) only come in when they are filming. Oh, the lies of reality television. We all received matching shirts to wear on the Hill which is great for visibility, but bad for the amount of time I spent obsessing over what to wear before I left. I suffered a closet induced mental breakdown for nothing, but whatever. My Jackie O. dress is still a bit tight where my body mistakenly thinks there is still a baby inside. My ribs would have hurt by the end of the day anyway. We rose early to get through security and where I met my favorite government employee of all time. As we prepared to pass through security at the entrance of Cannon, there was a hysterical number of abandoned coffee cups just inside the door on a ledge. Had I had the time, I would have taken a picture. A female security guard walked over, took one look, and it was, “Oh Hell NO! This isn’t a trashcan! Tell those people outside to use the one out there!” Then she stormed off yelling, “This is bullshit!” I should apply for that job because I used to do that when I worked at Barnes & Noble and Starbucks, and I always got in trouble…

We Georgia volunteers managed to meet with the offices of all the representatives but three, Paul Broun and David Scott, as we never got a response to our requests from either office, and Sanford Bishop, who responded, but had no staff available to meet with us. The morning started off great as our very first meeting was in the office of  supporter Rep. John Lewis who promised IMG_2595continued support. We had other positive meetings, but this was the only straight up yes on the spot. Of course, given that we were there just before the sequester, these meetings were a little different from what they would usually be. What we should have been doing was asking for them to sign the FY2014 Dear Colleague letter to support tuberous sclerosis research. Problem is, as you probably know, Congress never got around to dealing with 2013. So we were trying to get that through, and let them know that eventually there will be a letter for 2014. You see, the House wrote a bill that funded the Tuberous Sclerosis Complex Research Program last summer, but things came to a stop at the Senate and here we are still awaiting a budget for a year that will probably be over before anything gets done. So thanks to the sequester that went down a couple days later ,there are more cuts…to everything. I could rant here about how this kind of performance in the private sector would lead to mass firing, but other people are far better at discussing politics.

With Georgia representative Tom Price.
With Georgia representative Tom Price.
Just after getting a promise of support.
Just after getting a promise of support.

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That evening the Alliance held the Volunteer Awards dinner, my final evening of being introduced to people and pretending not to know who a lot of them were already, as if I haven’t spent the last several months since Connor’s diagnosis stalking everyone online to see how others were faring with TSC. “Oh, hello, nice to meet you!” (In my head: So you’re the mom of so and so, who’s 10 years old, loves soccer, and went as a zombie for Halloween).

Dinner was steak, potatoes and asparagus. Why am I telling you this? It’s significant and will affect the next several days of my life.

Then there were drinks in the lobby, and a trip to a bar across the street.

With Wendi and Reiko, TSC moms and volunteers.
With Wendi and Reiko, TSC moms and volunteers.
With Wendi and Chris Hawkey of the band Rocket Club, emcee for the awards ceremony.
With Wendi and Chris Hawkey of the band Rocket Club, emcee for the awards ceremony.

It was a fun evening, but given the nature of the trip I didn’t get too crazy with the drinks. That turned out to be stupid. I might as well have danced on tables for all the good it did me because when I woke up the next morning, I was NOT well. Wendi had an early morning flight, and should be very grateful of it. I spent about an hour or so being “not well”. And then a miraculous recovery! That’s how I roll. I’m never sick for long. So I spent the next few hours before my flight checking out the monuments.

Just cuz I tried to hop the fence for a photo didn't necessitate a physical assault. Jerks.
Just cuz I tried to hop the fence for a photo didn’t necessitate a physical assault. Jerks.

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Don't I look healthy here?
Don’t I look healthy here?

I found myself feeling particularly tired after a couple hours, which I chalked up to the fact that I hadn’t gotten much sleep the last couple nights, so I headed to the airport early. This turned out to be the only reason I got home that day. I arrived at Reagan to learn that my flight was cancelled and I could either go standby for the next two (full) flights home, or I could take the shuttle to Baltimore and fly from there. Two other early arrivers were in the same boat. I’m quite grateful to one of them, who is a weekly business traveler and had beat me by only a few minutes. Despite the clear skies and the fact that they had another (full) flight departing 45 minutes after ours, AirTran tried to tell him it was weather related. He called BS on that one, and they finally admitted the plane had mechanical issues. So at least for my irritation I got a free shuttle ride and plane ticket (which will probably be so blacked out I can’t use it). While I appreciate the free ticket as compensation given that I still ended up on a flight that departed roughly the same time, I DO  NOT care for them lying. I don’t care if it’s typical of the industry…it’s crap. I also do not care for the fact that I had booked a 2:00 flight, and two weeks earlier I received an e-mail that my flight was cancelled and I was now on the 4:00. I accepted that change–it was fine. But now this, too. And he said, well we sent you an e-mail today. I said, “Yes, you did send me an e-mail today, and it contained my itinerary exactly as it still was. The reference to the cancellation, I thought, was reference to the 2:00.” And I’m not crazy because the business traveler got the same e-mail and didn’t understand the flight was cancelled either. His colleagues that hadn’t arrived yet would later receive e-mails that they could not fly out until the next morning.

At any rate, they paid for a shuttle in which we had to bully the driver into actually taking us. And then when he finally left, he turned around to go back and get someone else despite our protests that we would barely make it as it was. Nonetheless, we did make it. And I thought I was dying the whole way.

Turns out, I wasn’t better after all. But I can’t even claim nausea. It was soooooo much worse. More of a “stomach full of acid eating away at my insides” kind of thing. The TSA lines were thankfully short, just the perfect length in fact, for me to redress, run for the bathroom and retch loudly enough to horrify the entire row of stalls.

Oh my God, it’s Cambodia again. The only time I had ever thrown up on a plane before. Oh please, not again. I can still hear that mean French lady snapping, “Close ze bag! Eet smells!” I rode the wave of post-puke feeling better-ness into feeling hopeful all was well. Until I got on the plane and was seated next to two girls  with attitudes that had seemingly never flown before. I mean, I don’t care if you’ve never flown, but I care that you can’t comprehend that the flight attendant has told you three times to shut off your devices and that you refuse to put your purse under the seat because the floor is dirty. I know an omen when I see one. I was so miserable between the bathroom and my seat, that I actually started to cry. The flight attendant was really sweet and gave me a hug. But then I was terrified of letter her know I was sick because she’d think I’d contaminated her, even though I was certain it was food related. Yeah, the ride home in Chris’s car wasn’t much better. But at least he brought plastic bags.

In defense of the hotel, I have to say I don’t know of anyone else getting sick. I thought the hotel was otherwise fantastic.

The wall in my hotel room.
The wall in my hotel room.

I feel bad if I picked this up elsewhere and I’m blaming them, but timing wise, I just don’t know where else it happened. And they were a little lax with the food I thought, as far as taking a long time to bring things out and letting stuff get cold…so that’s my guess anyway. I would have the pleasure of battling my body all the way to Boston, where I had to fly two days after I returned. But that’s for another entry if you made it this far…if the mention of vomit hasn’t scared you away. Don’t worry. That’s as detailed as it’s getting.

DC footwear on the Metro.
DC footwear on the Metro.

All it takes is one baby zombie to start the Apocalypse.

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.

Monday-private music therapy

Tuesday-physical therapy (most weeks, not every)

Wed-group music class

Thurs-swimming

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.)

Brains...errr, noooose!
Brains…errr, noooose!