A New Diagnosis

When I fill out medical forms that ask me for Connor’s diagnoses, I write tuberous sclerosis complex, epilepsy and developmental delay. As of Friday, I will now write autism

When Connor was first diagnosed and we read all the possibilities that could possibly come with TSC, autism terrified me the most. I really didn’t understand it. I’d worked with kids with varying degrees of autism in the classroom, some of whom I was not remotely equipped or provided the training to work with and others that were favorites of mine. But I was terrified of the word. I thought that if the day came that we received that diagnosis, I would jump out of a window.

Two years changes a lot.

I can’t say it came as a total surprise. I refer to some of Connor’s behaviors as “quirks.” I guess I was just hoping they could stay “quirks” and not become a diagnosis.

We went to Boston for his two-year visit with the TSC study. It was a low key visit since Chris and I had both caught Connor’s cold from the week before and were not particularly energetic (and why I didn’t get in touch, Ann–we’ll be back next Feb!). We also had an appointment with the Boston TSC Clinic. Even though I suspected deep down that this day was coming, I didn’t actually realize it would be Friday. The study had sent his results from the autism scale given the day before to the doctor. The words “Connor has autism” were never actually spoken. We were discussing some of his behaviors and suddenly we were talking about therapy options in addition to what he already receives. An education specialist was brought in so she could help us find local resources and I found myself saying, “So this is it? Is this an official diagnosis?” It was. But the sooner the better and we now move forward.

We also finally got a little more detail on his MRI. It wasn’t as specific as I was hoping for, but we do now know his brain has somewhere around 20-30 tubers, probably closer to 20. They are scattered throughout. I thought he had two SENs in the ventricles of the brain, but he actually has three. However, they are so small that they are nowhere near being classified as a SEGA (which can block fluid in the brain and require either surgical intervention or use of Afinitor or Rapamune) and therefore aren’t currently an issue (and hopefully never will be).

I’m sad that we only have one visit left with the Boston study. I really enjoy going up there. I think I could actually live in that city in spite of the cold and that says A LOT. I was really touched by the fact that while we were there, non-stop coverage was being given to the deaths of two firefighters and who they were. It gave the city a close knit feeling and reflected a genuine interest in the loss of two heroes. It’s not something I’ve ever seen in the 20+ years I’ve been in Atlanta, where we just get the 6 p.m. death count.

These are the only photos I took which tells you how off I was this trip.

First big boy flight with his own seat. On the way back we were told we couldn't use this seat because it wasn't airline compliant. Gotta love consistency.
First big boy flight with his own seat. On the way back we were told we couldn’t use this seat because it wasn’t airline compliant. Gotta love consistency.

photo-176

Connor loved the noisy geese.
Connor loved the noisy geese.
Advertisements

The Big Birthday Weekend

Despite a cold, Connor rocked out the double birthday weekend. His bestie David was born the day before him, so Friday night we celebrated Connor’s birthday with family and on Saturday we went to David’s birthday party. The weekend was slightly marred be the return of seizure activity after 12 days seizure free, but I’m hoping the cold was the trigger and we can get back on track once it is out of his system.

Connor’s Birthday

IMG_6589

IMG_6595

IMG_6599

IMG_6610

IMG_6612

IMG_6623

David’s Birthday Party at Rancho Alegre Farm

IMG_6632

IMG_6636David the birthday boy!

IMG_6662

IMG_6674

IMG_6671

IMG_6679

IMG_6680

IMG_6675

IMG_6654

I waited all day to see Mr. Goat and all he did was scream in my face. Sadness.

We’re gearing up for the TSC walk on May 10. Please consider donating here.

Let Our Voices Be Heard

Guest Post by Mixed Up Daddy

I beg you to take the few minutes it will take to read this and the few minutes it will take to act. We can make a difference if we stand together.

Quickly, let me apologize to those that come to this blog to get updates on Connor. I swear I, Mixed Up Daddy, am not trying to highjack this blog with political rants, and my wife will get back to writing posts on Connor, but she has graciously allowed me to write one more post about politics, and what I feel should be the most important issue for everyone – being heard in our government process.

Based on my friends who span all parties and political groups, and who disagree on many topics, the topic of “being heard” has bipartisan support. Let me also say that this is not just a topic on Georgia state politics (although I may reference Georgia as an example since that is where I reside), but most states and our federal government.

As we saw in Georgia on Thursday March 20th, the last day of our legislative session, once again our elected politicians chose to ignore the majority of their constituents and either never vote on bills, or defy the overwhelming majority of the public and vote the other way on bills. Rest assured this is happening in every state.

No instead we have politicians like Georgia State Senator Renee Unterman tweeting out 4 hours before the end of the session that others were tearing up paper in preparation for their confetti to celebrate the end of the session. (In Georgia our congressmen and congresswomen feel it is okay to “trash up” their chambers, and celebrate that they have screwed over Georgians once again.) We also have childish games like those played by Georgia Lt. Governor Casey Cagle who refused to bring bills up for votes in the senate because the house wasn’t moving on senate bills. We are being led by a bunch of adults who act like 3-year-old children!

All too often I hear those in the general public say, “This issue is so obvious, why can’t or won’t our government pass it?” I am guilty of it as much as anyone else. Well this is our chance to change things. The time is now for us to tell our elected politicians that we, the 99% that cannot buy politicians, votes, and laws, demand our voices be heard, we demand to be truly represented, and we demand to have our votes counted.

There is no reason in this day and age that we as “the people” are not allowed to vote on certain issues faced by our states and country. Some will say, “What are you talking about, we have free elections and thus get a say in our government?” Do we? Yes we get to elect those who you will represent us, but are they really representing us? There are many issues that we the general public can’t agree on, but there are quite a few that have overwhelming support in the general public, but never seem to get passed by our government (at the state or federal levels). There are some great politicians at state levels and at the federal level, but unfortunately there are far too many more that only represent their donors (the individual donors, corporate donors, and lobbyists). Let’s face hard facts, the more you donate the more you matter. Unfortunately most Americans do not have the ability to donate to campaigns, and thus are ignored by their elected politicians. The politicians will claim this is not true, but the American people are not as stupid as they think.
So how can we solve this problem? This can be solved by letting the people be heard. There are a few states that actually are progressive enough to allow this, but far too many do not, and the federal government does not. What am I referring to? Let the general public vote on certain initiatives and referendums. There is no reason this whole map is not dark blue.

I am not saying that every single initiative and referendum should be voted on by the general public, but there are certainly some that have such widespread support either for or against that they would be able to garner a certain number of signatures on a petition to get added to the ballot.

Of course most politicians would balk at this idea. They will claim that we have a democratic process already. That is partly true. Times have changed though and are changing more and more each day. This isn’t 200 years ago, 100 years ago, or even 50 years ago when we had to elect individuals to represent us because we couldn’t get our messages out. These days we have 24 hour news and can contact anyone, anywhere, at any time via cell phones, emails, etc. Our voices can be heard now. And they should be heard now.

Our politicians have no problem getting involved in the politics of other countries, demanding that they allow the democratic process to prevail, yet they will not allow that full democratic process here in America. Don’t get me wrong, we still have a better process then most countries, but it can be better and more democratic.

Some politicians will state that we can’t allow this because of certain laws, well guess what, you make the laws and can change them, and we are demanding that you do. Remember Mr. or Ms. Politician, you work for us.

So what can be done? I am here to ask for everyone’s help on this. I am begging for your help on this. If you ever get involved in any issue, this is the one I am asking for help on.

Contact your duly elected officials (you can find out who your elected officials are here, ) and demand to get their opinion on this topic and ask them if they will take the lead on this issue. If they say they aren’t for this or won’t take the lead on this, let everyone know, and vote them out.
If they claim they are for it and will take the lead on this issue, let everyone know, and if they don’t hold up to their end of the bargain let everyone know that, and vote them out.

Contact the media and demand that they bring this topic to the forefront of their reporting and keep it there until it is enacted in every state and at the federal level.

If you are not comfortable writing to politicians and the media, write them a simple note saying you want their opinion on this matter and send them to this page and let them know this is an issue you want to know their opinion on (politicians) and want reported on (the media). If your elected official does not get back to you or ignores you (such as my state senator Judson Hill who ignores the dozens of his constituents that I know that have contacted him), keep on them, and let everyone know they are ignoring you, and vote them out.

Demand that they take action on this now, not “some point in the future because we have more pressing issues”. There is no more pressing issue than letting everyone have a voice (vote). If your state is like Georgia and is only in session 40 days a year, and won’t be back until next January, demand a special session. Of course the politicians will say this takes money we don’t have, but they waste money each and every day, and each and every year in their budgets. Nothing is more important than allowing the American people to be heard. What are they afraid of? Don’t tell us you will take it up in the next session (next January) hoping we will forget about it. This will probably be a common reply as this is a big election year, and they hope they can ignore this issue right now, and then have the American people forget about it by the time the next big election rolls around in two year. Take it up now. If they don’t, or don’t vote for it, vote them out. Vote them out this year.

If your state requires that the governor call the special session, demand that they do. If they don’t, vote them out.
Let’s be honest, this special session should not be a long one. If we can get our voices heard, they will know that this is what their constituents are demanding and that this should be passed. If it is not passed, vote them out.

I also know there are a lot of people out there that say they will never vote for a democrat or never vote for republican, but if your elected politician will not get behind this and take the lead on this and vote for this, no matter what political party they are with, vote them out.

The last time I checked this was a nation “by the people, for the people”. We deserve to have a bigger say in our government. As we see each and every day, each side of the isle, at every level is playing games. Well our lives and our country are not a game. Since they will not represent us, it is time we force them to allow us to have more of a say in our lives and our country. Let’s show the world what a real democratic country should be like. And if they won’t allow us to have more of a say, vote them out.

Let’s come together and not allow them to ignore this issue “because it is an elections year” like they do every other year with pieces of hard legislation. This is an issue to be taken up now, otherwise, vote them out.

Please share this will as many people as you can. The only way we can have change is by having our voices be heard. If we, the 99% that can’t buy politicians, votes, and laws, band together we can finally force our politicians to listen to us. Only then will we be able to have a say, and finally get to have votes on the issues that so many of us can agree on, but they will not act on.

Happy Birthday, Little Man!

Two years ago at this time I had no idea how much my life was about to change. I mean, I had some idea considering I gave birth just a few hours prior after a spectacular epidural after checking in the night before to be induced as a precaution related to findings on the ultrasound.

Right now, two years ago around noon, Connor was off being checked out. He was having the ordinary newborn exams, but he also had a cardiac exam by a specialist due the abnormalities found in his heart ten weeks earlier. They had never grown or become problematic, so by the time ten weeks went by, Chris and I thought it was some flukey thing that would require monitoring, but nothing more.

I did not know that in a few hours Connor would begin seizing, or that he wouldn’t go home for 37 more days.

I did not know we would be returning for brain surgery in four months.

I did not know he would develop infantile spasms in five months.

I did not know he would be developmentally delayed.

I did not know that as I had walked around for the first 30 weeks thinking, “lucky me! No morning sickness!” that chromosome 16 had mutated right away resulting in the later development of heart rhabodomyomas and brain tubers.

I did not know what tuberous sclerosis complex was.

What I know now is that Connor is awesome and funny, loves books and is the coolest, most adorable two-year-old on Earth.

HAPPY BIRTHDAY, MONKEY! YOU ARE KICKING TSC BUTT!

IMG_6395

HB885 — the Georgia medical cannabis bill — died tonight.

And when it died, this is what it looked like.

1461321_10203535527814157_581029929_n-1Glad I couldn’t make it down there today. I wouldn’t have wanted to watch this celebration in person. I’m so sorry for those parents that did have to see it live. A  live stream was more than enough for me. I cannot begin to express the countless hours, time and money (parking, travel, childcare) that these parents put into this. Representative Allen Peake did everything he could and for that we are thankful.

Short version — most of which I stole from someone on Facebook — because I’m tired, ticked off and feeling a migraine coming on:

The Senate refused to pass HB 885 unless an autism insurance bill was attached because the House refuses to vote on the autism bill alone. Senate passed HB885 with the autism bill attached, then sent to the House who refused to vote on it with the attached autism bill. 

Then late tonight, with HB 885 stalled in the House, the House sent SB291 (already passed in the Senate and unrelated to HB 885) to the Senate for a vote with the HB 885 language included. Senate refused to vote on SB 291 because it did not have the desired autism language.

And with that, the state of Georgia made it clear that it does not care about kids whether they have epilepsy or autism. But they do care about their end of the night paper party!

photo-2

 

 

An Open Letter to Senator Judson Hill of Georgia District 32

[Update: Judson Hill stepped down from the state senate in 2017 to run for the the seat left empty by Tom Price, who accepted a role in Donald Trump’s administration. Please read this if you are considering voting for him]
1978746_10203365427517417_1560845088_n

Dear Senator Judson Hill,

I am shaking with anger right now. The Georgia Senate just voted moments ago on HB 885, the medical cannabis bill. As it was discussed, my son’s 12-day seizure free streak ended at my feet. The bill passed 54-0. Two people didn’t vote. Where were you?

You have constituents that have tried to reach you for months. You have blown us off. You have tweeted and posted about your work on on SB 98, a bill to prevent healthcare plans from funding abortions. But you are silent on two bills that help children who have already been born.  Two bills to benefit children: one bill to make insurance companies provide coverage to children who need therapy due to an autism diagnosis and another to help parents obtain a medicine that could help children with severe seizure disorders, and you did not vote on either. Why? Clearly, you have constituents that want to be represented. Perhaps I’m outnumbered? Maybe you heard from more people that didn’t want you to support these measures than did support. In that case, you didn’t represent them either.

I first e-mailed you on January 9. I did not hear from you, but given that the bill started in the House, I figured there was time, and that I’d hear from you when it became a Senate issue.

I e-mailed you again on January 31.

And February 6.

And February 24 in regards to SB397–the autism bill you didn’t vote on.

And March 7. Twice.

And March 11.

Plus an e-mail from my husband.

On February 5 we had a scheduled face-to-face meeting. I came down to the Gold Dome with my son and arrived at your office at the scheduled time. You were not there. You had not come in yet that day. No one could tell me when you would arrive.

On March 10, I attended your town hall meeting that you scheduled. You did not show up.

I tweeted you on several occasions:

March 8

and March 11

and March 13

and March 19. Twice.

I have never received any response from you whatsoever. I do not know of anyone in the district that has, and I won’t even get into how many times you’ve been contacted by others I have talked to. My efforts to reach you pale in comparison to the efforts of another nearby family who has a far more dire situation.

I guess you can afford to treat your constituents that way when you are unopposed.

But someday you won’t be, and I can’t wait. I will be there and I will be vocal.

Sincerely,

One of your many irrelevant constituents

Judson_Hill

Update:

I finally sorta kinda made contact with Judson two years after I posted this letter. Apparently, the key to getting his attention is his wife. Rep. Allen Peake had posted on his public page about his disappointment in the failure of the 2016 Georgia legislature to expand medical cannabis. Senator Hill’s wife commented and the following thread resulted on that post.

IMG_8874IMG_8875IMG_8876IMG_8877IMG_8878IMG_8879IMG_8880IMG_8881

img_8882img_8883

I refrained from pointing out that the family he spent time with was the one that received the most press this year.

But this is how he handles “problem” constituents.

img_2427

Eleven Days Seizure Free!

Remember that Connor kid I used to write about before politics, politics, politics? He’s still around and doing great.

IMG_6571Connor is getting closer and closer to walking. We can now hold both hands as he takes forward steps to us. At his last physical therapy session, his therapist decided to remove the seat from his gait trainer/walker. I thought she was nuts. I thought he’d slump down with the waist support under his shoulders and refuse to cooperate, but he maintains standing and he’s moving better than ever. We had it locked so he couldn’t turn but could go back and forth in a straight line. On a whim the other day, I unlocked the ability to turn and though he careened a little out of control into furniture and the walls (guess we will paint this room last) like Lindsay Lohan behind the wheel of a Mercedes, he had a blast trying to get around.

The best news is this:

IMG_6574

Though I started tweaking his diet back in December, we started the full-on modified Atkins diet around the second week of February. We haven’t seen a seizure since March 7. Today is the 19th.

The magic of some whipping cream and olive oil. If only dietary therapy worked for everyone. Thank God. Colorado looks gorgeous, but I do not want to take on refugee status while we wait for the rest of the country to catch up to 2014.