Tag Archives: TS Alliance March on the Hill

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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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