We are in the New York Times today!

Thursday afternoon after we got home from ice skating with some of our favorite folks (one of the fun summer things we've been up to lately), the doorbell rang. I said, "Who is it?" fully expecting it to be the neighbors saying our chickens had escaped again...or maybe a proselytizer of some sort. But the answer was, "Manny Fernandez. I'm a reporter with the New York Times looking for Kyla [Last Name]." I was shocked! Reporters from the New York Times do not show up on my doorstop every day out of the blue!

As you probably already know, the Supreme Court upheld the Affordable Care Act that day and it is a big news story. The reporter had been in our area because there is a high rate of uninsured here and he had seen an earlier article in the local paper about us and tracked me down. I spoke with him for a few minutes, but because it was just me and KayTar here, I couldn't do a whole lot of talking. I asked if he would email me his questions and I would respond that way and then we could touch base about anything else the following day and that is exactly what we did. Yesterday, the reporter and a photographer came back and we talked a bit more and got some photos.

I felt very comfortable with the interview and what I said, but I'm always nervous about how what I say might be edited and perhaps not stay true to what I intended to communicate, so I was anxious to see it this morning and woke up much too early to check on it. I *think* it came across really well. I definitely didn't read it and think "That's not what I meant!" Whew! It is online and in print today (page A11). KayTar is SO excited to have a picture of her kissing a sock monkey in the New York Times. When she heard the reporter and photographer were coming yesterday, she said, "I thought I was going to be a nobody, but I guess I'm going to be a SOMEBODY!" Haha! She cracks me up! She's ALWAYS been a somebody in my book!

Here are the links to the article and the audio blip from me.

My child, every child.

I have a medically needy child.

Every day, she needs Qvar, Miralax, and specially compounded Prevacid.

Most days, she also needs Albuterol and Benadryl.

Some days, she needs Zofran for vomiting, Triamcinalone for granulation tissue, Vusion for her g-button site, too.

We never leave the house without her EpiPens, Benadryl, Zofran, Albuterol and spacer mask, in case of allergic reaction, asthma attack, or neurological episode.

She has a feeding tube and receives 3-4 daily feeds on average. This requires shipments of Pediasure and tube attachments on a regular basis.

She sees 9 physicians for a variety of issues that are without overall diagnosis; our pediatrician for regular medical issues, a neurologist for her episodes and underlying neurological problems, a geneticist, an ENT for her profound unilateral hearing loss, a GI/feeding disorders specialist for her constipation and feeding problems, an ophthalmologist for her minor sight impairment, a pediatric surgeon for her g-button placement and subsequent checks, an orthopedist for her joint ad muscle problems, and an allergist for her curious food allergy.

She needs weekly therapies, occupational to help her overcome her food aversions and physical to help her strengthen her muscles and improve her balance.

She is also uninsurable according to the for-profit insurance sector.

She has been uninsured twice in the past year, through no fault of ours, and while we are incredibly thankful for the CHIP plan she is currently covered by, to get her enrolled my husband has had to take a pay cut and we've had to pay for unnecessary childcare to lower our income sufficiently for qualification. There are currently no other options for her and without insurance, we could not provide for her basic medical needs.

This year I've worked with some wonderful people and organizations attempting to rectify this situation in our state by creating a CHIP buy-in program for children who have no other insurance options, but are above the 200% FPL cut-off guideline. I've shared our story several times, at the Texas Capitol, at the United States Capitol, in a magazine, in newspapers across our state, on television, and at a few other speaking engagements. I've done what small part I could to raise awareness on this issue, because before it happened to our family, we simply did not know it happened. We did not know that there were good, hardworking men and women who wanted and needed insurance for themselves or for their kids and it simply was not available to them. The bill that was created to cover these kids was a solid, bipartisan supported bill and we felt that it had a great chance of being passed. Unfortunately for the children in our state, the legislative body allowed another issue, namely Voter ID, to crowd out this CHIP bill and last night the House of Representatives closed session without ever voting on it.

We, as a family, were counting on this. 80,000 other Texas families were counting on this. The uninsured children in our state were counting on this. And in the end, despite rallying over 1,000 calls to the Speaker's office, the issue was treated as if it were unimportant, left to die without even a vote. In spite of the Voter ID clogging, this bill could have survived if action was taken. Our state Senate passed it out THREE times, but the House dropped the ball repeatedly. Though, even if the House had voted it through, our governor had already expressed his disapproval and likely would have vetoed it. This is why Texas is the national leader in number of uninsured children, because they simply are not a priority when it comes time for action, and I find that inexcusable.

Instead of breathing that long awaited sigh of relief, last night my husband and I discussed what to do next. In a few months, he's due to receive another raise and the following month we will have an income check. He's going to have to request that he not receive a raise this year, to prevent our children from being dropped from the program. And next year? And the next? We will continue to do this for as long as necessary to provide KayTar access to the medical care she needs, but it should not be this way. Every child deserves access to affordable comprehensive medical care, regardless of their health status or income. Healthy or sick. Rich or poor. Yours or mine. Every child.

Even this child.

Cross posted at Hopeful Parents.

Texas CHIP Bill is in peril!

Governor Rick Perry has stated he is not in support of the CHIP expansion (buy-in) bill that would provide insurance for 80,000 uninsured Texas children, including those like our KayTar who are considered uninsurable and fall through the cracks of the for-profit insurance industry. If the bill makes it to his desk, there are major concerns that it will be vetoed based on what he has said. This bill has had strong bipartisan support, as well as strong support from the business community in Texas, and should not be facing a veto at the hands of the governor.

If you live in Texas and want to help, here is what you can do:

-Contact Rick Perry's office by email and/or by telephone (800) 252-9600 and say "I and the majority of Texans DO support CHIP"

-Contact Speaker Straus by email and/or telephone (888)327-2086

-Contact your local representative (you can find out who your representative is here)

***There has been a change, the amendment I mentioned was voted off, so when you call your Rep and the Speaker, say, "Pass CHIP buy-in. A clear vehicle already exists in SB 841 and HB 2962."****

All kids in Texas deserve access to affordable, comprehensive healthcare, regardless of their health status or income, let's remind our legislators of this.

Please feel free to pass this along!

Like drawers of a filing cabinet, so are the days of our lives.

Medical:
This morning KayTar had an allergist visit. We love allergist visits. Seriously, we do! In addition to the fact that KayTar has decided that "specialist visits" are actually code for the KayTar Variety Hour (complete with a captive audience), our allergist has really warmed to KayTar and seems to genuinely look forward to seeing her. Turns out her latest labs didn't register any allergic reaction at all, so we're still avoiding nuts, but really unsure about the whole nut allergy. Because some people are reactive even though the immunoCAP is negative, the next step is a nut challenge, which they only do in the hospital. She's referring us to her husband, who is an allergy/immunology fellow at our children's hospital, at least in part because she said she wants him to meet KayTar, because she's such a hoot. I called about scheduling today and should hear back in the next couple of days. On a sad note, this was the last time we'll see her! They are moving to another state once his fellowship ends. We've only been seeing her for a few months, but she and KayTar click so well, we're sad to see her go. Strangely enough, when I called to schedule her genetics follow-up this afternoon, I discovered we were losing TWO doctors! Her geneticist is also moving out of state at the end of the month. We'll be seeing a new doctor for our follow-up visit, we're hoping he can look at the case with fresh eyes and see something someone else overlooked, since we've hit a bit of a dead end.

School:
I spoke with KayTar's new school and BubTar's transfer is a go! Unfortunately, they do not have a full time GT class, though, they do tend to group the high achievers together. There is a pull out program for GT and the teacher will be able to give him enrichment activities to keep him engaged in the regular classroom. While I'm a little bummed that it isn't a dedicated GT classroom, it sounds like he'll manage just fine. We could pursue grade level testing to move him upwards and I don't doubt that he could move onto third, but we think it is best that he stays with his same aged peers. He's just excited that there is bus he might get to ride and that there is no weekly chapel to sit through, such are the priorities of seven year old boys.

Other:
The CHIP buy-in bill might not make it through state legislation if they don't get to it tonight, so everyone PLEASE (pleasepleaseplease), cross your fingers, say your prayers, or whatever else you can offer up that this one makes it through.


*I have a 3-drawer filing cabinet on my desk, labeled Medical, School, and Other...as I finished these paragraphs I sat back in my chair and caught sight of the drawers, the recurring themes of my life.

Mrs. 'Tar goes to Washington

Wednesday night I flew into Baltimore at about 11pm. Weather and traffic were terrible (it was very nice to have a chauffered car waiting for me so I didn't have to hail a taxi) and it was about 1am before I got to my hotel room. The hotel reminded me a lot of the W in Chicago and I was a little sad to see the lobby wasn't filled with drunken bloggers when I arrived! (Suggestion to Swanky Hotels: You should keep drunken bloggers on staff to loiter in the lobby, they really brighten the mood.) Once I got to my room, I plugged in my laptop and much to my dismay couldn't connect to the Internet. As my hands began to shake from the early symptoms of withdrawl, I dialed the tech support line and whoever it was that answered the phone in the middle of the night was a lifesaver. He hooked me right in, free of charge! After briefly checking in online, I hopped in the shower and tried to go to sleep, but it takes me forever to fall asleep in a new place! This was actually the first time I've stayed in a hotel all by my lonesome, which was a little strange, but also nice and quiet.

My alarm went off at 7am and I started to get ready. I ordered breakfast as advised, but it did not sit well and I ended up getting pretty sick. I thought I had come down with KayTar's stomach virus, but thankfully that wasn't the case. I was fine the rest of the day, just suffered from low blood sugar symptoms once a few hours passed without food. After checking out, I walked over to the CDF office with a very nice man named Thomas and we met up with other participants and drove to the clinic. It took a while for the celebrities to arrive, so we all had a chance to chat a little. I spoke with Sharon Ladin who told me about this new website that was just recently launched Speak Now for Kids, which is advocating for children's healthcare reform and is looking for stories from all across the nation about uninsured and underinsured children. (if you have a story to share, please do!).

Once the celebrities arrived, we all took our seats in a big circle of chairs (surrounded by media, EEK!) and started the discussion. I was the first speaker! Two other mothers were present to share their stories, which dealt primarily with being underinsured, and several of the doctors from the clinic shared their own experiences with patients in varying situations. I think it went very well! From there, we went downstairs and a few of the celebrities read stories to the children in the clinic, after which we all hopped on a bus and drove to the Capitol. While on the bus, I sat next to Regina King and chatted a little while scarfing down some pasta and a delicious brownie (with nuts! it felt so rebellious!) and by that time we had arrived.

It had turned into a beautiful and was even a little warm on the long walk up to the building! I'm not used to running around in heels and my feet are paying for it today! On the way up, I had a chance to talk with Keri Russell and Jessica Alba. Everyone was very friendly and personable. It was a wonderful group of women! At varying times of the day I also had the pleasure of talking with Jurnee Smollett, Ali Wentworth, Malaak Compton-Rock, Michelle Fenty, Katie McGrath (JJ Abrams' wife, who was incredibly kind and passionate about children's health reform), as well as many people from the Children's Defense Fund, including Marian Edelman Wright, and women from related organizations. It was quite a day, that's for sure.

Once we arrived in the room, which was gorgeous, we were joined by four congresswomen from varying states and once again I was able to share our story. It was warmly received, as it usually is and I hope these women will be able to use it as a reference when explaining the crack in the system to those who cannot see the cracks for themselves. There are millions of children falling straight through the holes in our current system, just like mine did. We have say enough is enough and fix things and fix them the right way this time.

After that meeting, Susan Gates from the CDF walked me back to the office so I could catch my car back to the Baltimore airport. My driver totally hit on me, which is one of those sentences I never thought I'd write, probably because I don't have many drivers and also because I've been married for (a month shy of) 9 years and don't get hit on regularly. He was laying it on thick though, it was pretty entertaining, and he got me to the airport on time, too! The security gate was pretty backed up and I made it to my gate just in time for boarding. Once I got to the airport here in town, I still had another hour of driving ahead of me (this time I was driving myself and no one was complimenting me, what a pity), but Josh let the kids stay up to see me. KayTar was standing at the garage door and shouted "HI MOM!" and squeezed me to death when I walked in. BubTar was like, "What'd ya get me?!" And just like that life went right back to normal.

It was such a whirlwind trip, I was there for less than 24 hours, but we really managed to pack it in. I met so many wonderful people and heard so many different stories, it was a little overwhelming. It will probably take a few days to really process it all, but I'm so glad I had the opportunity to go and share our story once again in a forum that will allow our voices to be heard far and wide. Sometimes I really wonder how I ended up in the middle of all of this, but I think in the end it will pay off, not just for my children, but for all of the children of this great nation.

Today KayTar's story was featured in Marian Wright Edelman's Child Watch Column. You can follow that link to read all about it. If you are new to my blog and don't know about our insurance struggles, it is an excellent summary.


PS: Can you believe I don't have a SINGLE photo? It was raining when I left the hotel so I kept my camera in the suitcase so it wouldn't be damaged. I should have photos by next week, though, and I'll be sure to share them.

PPS: I didn't proofread this. Don't judge me. ;)

PPPS: I almost forgot, I made a 99 on that exam I has to take on the same afternoon that I flew to Baltimore!