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.

Some days I am too lazy to come up with a title.

Let's see...where did I leave off? Hmmm...oh yeah, it was Tuesday, she was sick and we were going to see the pediatrician the next day. So that's what we did! Her lungs didn't sound stellar, but there were no obvious crackles yet. Yet being the key word, as this is KayTar's pneumonia pattern. URI that resolves, a couple of days later she has a new onset fever, wet cough...we go to the pediatrician and her lungs sound yucky, but not quite crackling, so we wait and see, and 1-2 days later, we are back in for full-blown pneumonia! So this time, the pediatrician just decided to call it and treat. Generally speaking, I'm not in favor of antibiotics in these iffy cases and prefer to wait it out, but we've been through this enough for me to be pretty sure of where she was heading if we didn't treat. She hasn't had antibiotics since her pneumonia last February, so I was okay with it, as was the pediatrician. So she is on a course of Suprax and using Pulmicort once daily until she's sounding better.

We got her prescriptions filled on Wednesday, we paid $50 for them. On the pamphlets, it said, "Your insurance saved you $303.99 and $603.99." Can you believe that? $908+50=$958...high enough to be rounded to A GRAND! This is why I have a series of small panic attacks every time we resubmit our CHIP paperwork. This was just one illness...a drop in the bucket compared to the overall costs of keeping our girl running!

Speaking of CHIP, our appeal to change health plans was denied. We have to wait until our yearly renewal period to change health plans. Ugh. I'm not happy about this...I really, really want her to be seen by pulmonology. I feel like we've already been sitting on these breathing problems for too long, several more months is not acceptable to me. Not to mention, we are supposed to see the new geneticist in two weeks...and not doing that will delay further testing and our next appointment with her mito doc. I'm not sure what we need to do here, but I'm not really okay with putting it all off for so long. At least we HAVE insurance, though.

At the pediatrician visit, she and I discussed how KayTar's gut issues have been since the last visit. She brought up something I mentioned to her in an email after the GI visit, which was that the GI suggested that it may be disease progression. She said that she thinks of KayTar as a kid who has some challenges and limitations, but she's made such great strides and is always moving upward, so she never thinks of her in those progressive disease terms. She said, "It kind of made me..." and she paused, looked at me with a bit of concern in her eyes, put her hand on her heart, and frowned a little..."to think of her like that." It was one of those moments where I thought, "Gosh, we're lucky to have a doctor so invested in our girl." and "That is the kind of doctor I want to be." all at the same time. A lot of things are uncertain in life with KayTar, but it is much easier to handle with wonderful people on her team.

- Posted using BlogPress from my iPad

Weekend Update

The Gas Fiasco
As of 6:30 last night, we have gas service restored! What a trip this has been. Whoa. The new plumbing company we used was wonderful. Friendly service, FAST, and a decent price...all with the added benefit of discussing with a knowledgeable plumber. If you are a local friend and need plumbing work done, call Crown Plumbing! So, the plumbers started work on Wednesday. I came home to find the most beautiful looking trench that I've ever laid eyes on in the backyard, progress! They got the line replaced and the new up-to-code valves installed on Wednesday night, but when they pressured tested the line, gas was still being lost somewhere. We have (well, HAD) two old-school gas wall heaters in the bathroom...Josh didn't mention them to the plumber, because the guy from John Moore told him they were not important for this. Turns out, he was WRONG, they were important AND they were leaking gas. Because the new plumber wasn't prepared for working on these, he  had to get additional parts and come back the next day. The heaters were removed and the lines were capped off (and now we are sporting some wicked-fancy holes in our sheet rock) and he retested the line. It was STILL loosing pressure, so he went in search of more leaks. He found on in the cubby in BubTar's closet that houses the furnace. There was a leak at one of the 90 degree turns in the line, so he fixed that...then he found another...and ANOTHER! Three leaks up there, one in each of the bathrooms, in addition to the line itself detaching. Even though they were probably minuscule leaks without full pressure in the lines, it is still a little unsettling to discover! He fixed everything on Thursday morning. Thursday afternoon, a city inspector came out and said it was in working order and they would release the utilities so the gas company could return our meter and turn our service back on. That evening, a worker from the gas company came out and refuse to install our meter because the trench was not filled in yet. It seemed like a total BS excuse since the neither the plumber nor the city inspector mentioned that was a problem. Alas, what can you do? So he left and we still had no gas. Friday morning, the plumber had the diggers come fill back in the trench and we called the gas company back. I stayed home on Friday until it was time to take KayTar to therapy, at which time Josh came to sit at the house just in case they showed. They did show, but got called out on an emergency and said they couldn't say when they would be back. I just picked the kids up after therapy and brought them home to wait. It was Friday afternoon and we did not want to go another weekend without gas! He showed up at about 6pm and got us fixed right up. He said lines are snapping left and right in our city and he had been called out on 3 just that day! He also said that when people ask him what plumber to use he says, "I can't tell them who they should use, but I tell them who they shouldn't use and that is John Moore! Call John and pay more!" He also said the guy that had come out the night before will do ANYTHING to get out of working and there was no reason he couldn't have reattached the meter with the trench open. Siiiigh. More incompetence. It is all good, though, because we have gas again...after 16 days without it! A hot shower in my own home has never been as luxurious as it was last night! :)

KayTar + Nexium
KayTar started Nexium 2 days ago and it has been encouraging so far! The first day, she ate 2 pieces of bacon, most of her Pringles, an entire hot dog (hold the bun) and asked for a second at lunch, 3 mini-popsicles, and 2 still-frozen nuggets at dinner! This morning she has already had 2 pieces of bacon, a jar of baby food peas, 4 pepperoni, and a mini-popsicle. She told me that she hasn't thrown up in her mouth for 2 days! :) I'm feeling very hopeful about this medication switch!

Insurance Drama
Last Friday, I spent almost the entire day on the phone.The insurance issue with the new clinic and her current health plan has reached an impasse and we are going to have to switch. I first called the state to inquire about how I would go about changing health plans, since we never have, and I was assured that it was a simple phone call and we would be squared away. But before I made the switch, I called EVERYONE to be sure they all take the prospective new plan. I talked to probably 25 customer service reps...every clinic, doctor, pharmacy, HHC, therapist that KayTar receives services from was on my list. They all accept this health plan, so I called the state back. This time I was told we were no longer able to switch, because we had been on our current plan more than 90 days. We could appeal this decision in writing, but even if approved it wouldn't go into effect until after the first of October (at the earliest). Siiiiigh. I told her what the previous rep had told me and she said that was not the case. So I said okay, and then called back to try to reach the original rep. Except, you can't actually do that. They give you rep ID numbers, but they are useless because they do not have extension or someway to connect to do a specific rep. So I used this third rep as a tie breaker of sorts (or a tie creator? seems like the phrasing here is wrong, but you get the idea), and she said the same thing as the second rep, so I submitted a letter in writing...now we wait! As a little bonus to this story, I received a letter in the mail yesterday saying that the kids might lose insurance coverage at the end of October. I promptly had a series of small heart attacks while dialing the state HHSC to find out what was going on...only to be told that the letter was sent in error and we would be receiving a corrected letter in about 2 days. WHEW!

KayTar + head pains
Poor KayTar is having a lot of headaches/pains lately. She had at least 2 last week and one every day this week. We were talking about it a couple of days ago and she said, "I have head pain EVERY day." but she said it with a DUH tone of voice, like this was obviously something I should already know. They are not incapacitating and often she just wants an ice pack, but it still doesn't sit right with me. She complains of pain over her right eye on her forehead and in her eyes themselves. She has an ophtho check on the 27th, so if it is a glasses issue, we should know then. Otherwise, I'm not sure what is going on! Maybe sinus pain from allergies? We have her on Benadryl and Claritin, and her allergies seem well-controlled. Maybe headaches from transient desats? I honestly don't know. We see pulmonology on October 11th (since we had to push it back due to the insurance drama) and we see the new geneticist that day, too. Hopefully one of her doctors will have a helpful suggestion!

KayTar + OT
Yesterday was KayTar's first OT appointment in over a month! She was doing feeding therapy and with the gut changes and decreased feeding tolerance, we just took a break while we went through testing for that. Because it still isn't under control, we are taking a break from feeding OT and switching to more traditional OT for her fine motor strength and coordination. We have known for sometime that she has weaker hands than her peers, but we just have not focused on it until now. The therapist did testing with KayTar yesterday and WHOA, her hands are weak! She was tested with a hand gripper equipped with some sort of pressure guage, and she scored a 6 with one hand and a 7 with the other...normal for her age is 28-29! That is significant weakness. That combined with the inefficient way she grips her pencil and the EXTREME force she uses to push the pencil to the paper, it is no wonder she fatigues so easy during writing assignments. Until we are able to get her back to "regular" feeds, we will be doing all fine motor work in OT, and if we get her gut issues under control, we will add in some texture/feeding work, too...just not as much as before. Oh, and the OT really noted her new breathing pattern, too, and commented it was not nearly that bad the last time she had seen her. She wants the pulmonologist to make sure things are okay with her airway before we start back with the feeding stuff, too.

Following Up.

Today was KayTar's follow up with her mitochondrial specialist. It wouldn't be a visit to that particular clinic without a little insurance drama, so at check in they told me AGAIN that they don't take our insurance and I explained AGAIN that the doctor is in network for our insurance and we have seen her successfully before and our insurance has paid for it. She called billing and said that we would have to pay for the visit out of pocket and then file for reimbursement...it is never awesome to hear you are going to have to pay 300-400 dollars our of pocket as a surprise, but we didn't want to back out of the visit at that point, so I agreed. I have no doubt my insurance will pay as I've called them about 15 times about this situation and they always, always insist the doctor is IN NETWORK and needs no further authorization. It is a very frustrating situation, but hey...a few years ago we didn't even have insurance to get frustrated about, so I know it could be much worse than this. And the truth is that insurance is more than willing to pay, the clinic just doesn't seem to want to do the legwork.

On to the actual follow-up part of the appointment...R came with us again, in case KayTar needed a little attention while I was talking to the doctor, but it was unnecessary (but fun to have her company, as always) as KayTar was completely entertained with the two brain models that were in our room, along with a clear plexiglass head to put them in. She pretended to do brain transplants for most of the visit. At one point she changed from a brain surgeon into a zombie and cut the brain into "brain pie" and served it up to us from the head/bowl. So many fun things to do with brains! She really, really wants her own model brains (and tuning fork) now. As for the medical part of the visit, KayTar's labs came back within normal limits and her MRI was read as normal, too. I'm somewhat confused about the MRI as she has had 2 previous MRIs that were abnormal. I'm not complaining about a normal brain, but I'm not really sure how it went from abnormal to normal. She hadn't looked over her previous films (she didn't realize she had them), so she couldn't really explain it to me. She did say that certain metabolic diseases can present with brain abnormalities that later normalize. Also, two vials of KayTar's blood from last time was lost, so we had to re-draw labs for the acyl-carnitine panel and glycosylated tranferrin panels. KayTar was not a fan of the lab work, BUT the tech got it in one stick, so I was pretty pleased. The doctor said she is not going to diagnose her with mitochondrial disease because in looking through KayTar's medical files, she thinks that KayTar may have a treatable metabolic disease and she isn't ready to stop looking at this point. After mitochondrial disease is diagnosed, the search is off and we're not there yet. I nodded my head and said, "Yeah, okay." and she said, "Wow, you took that better than I thought." I guess some people come in there really looking for a diagnosis and take it hard when it isn't there right away....or maybe she is secretly reading my blog (yeah, right) and knows how much I want an answer for all of this. Yes, I'm looking for a diagnosis, I practically dream about it...BUT I want the right diagnosis when all is said and done. We started seeing this doctor because we were told she is the kind of doctor who cares about finding the right answer, whether it is mito or something else, and thinks a diagnosis is important. In our experience, many doctors don't feel this way, so I'm glad that she is committed to helping us figure it out, regardless of what the ultimate outcome is. She is referring us to a metabolic geneticist that she works with regularly and after we see her, the two of them will formulate a plan together...it will likely include another fasting study which is my absolute least favorite test of all time. I wonder if *I* can be sedated for this one. ;)

After the appointment, M (who is my savior in this clinic, she has been so patient and helpful through all of this which allowed me to keep my sanity!) came in and said we didn't have to pay up front, because she told billing they had to bill my insurance, because we already have proof they will pay. She told them that they either need to get their doctors pulled out of our plan so we can apply for out-of-network care or just agree to bill the insurance. Yay! But then I came home to a message about KayTar's pulmonology visit next week at the same facility...they said if we don't self-pay up front for the visit, they won't see us. The same goes for further appointments with the doctor we saw today. Since the metabolic geneticist we are being referred to also works out of this office, I'm sure the same goes for her. AGH! It took over an hour to get KayTar's pulmonology visit scheduled because the schedulers were insistent that they do not take our insurance...so I know the same will happen when I call to get her in with the geneticist. All of these doctors are in our provider directory, but that office just doesn't want to deal with our insurance because the clinic is not contracted with our plan. So now we are looking at possibly switching plans to see if we can get both our hospitals and all of KayTar's medical team covered, which span the two different hospitals and affiliations with two different medical schools...but I'm a little scared to switch based on a provider directory, as I've learned just how WRONG they can be! All of KayTar's doctors are listed in our current directory, but we are still having major issues with it. It doesn't really seem right that if insurance is willing to pay, the clinic can still keep us from being seen, but it seems there is little that I can do about it. I guess I should look at it as a learning experience, because by the time I am on the provider side of the medical billing process, I'm going to know more than I ever wanted to know about things like this!

Scare.

Last weekend, I was told that I might have cervical cancer.

My first thought was, "Oh shit. I have no insurance."

My subsequent thoughts were something like, "This is going to be MORE than expensive, and now that I have 'abnormal cervical growths' in my medical file, the chances of getting into a private plan is slim and the chance that a plan will cover any related charges is none."

Sometime after that, I got around to thinking, "Holy shit. I could die."

Then, of course, I spent some time mentally kicking myself around for not getting a pap spear done since my pregnancy with KayTar.

It was Sunday when I was told all of this, so first thing Monday morning I twittered nervously about it and then put a call into my OB's office. They were booked solid, so I found another OB who was able to see me on Wednesday. From Monday to Wednesday, I tricked myself into thinking I was coping better than I actually was, which as it turns out is a valid coping skill after all.

When I finally saw the doctor (after two days that somehow stretched into years), she said that everything looked good and the ER doctor had just seen some benign cysts. I could have kissed her. I didn't, but totally could have. Sweet, sweet relief. It suddenly felt like I had been holding my breath for a decade! When I paid my fee of $287, it felt amazing. "Only $287!" I thought, "What a steal! No biopsy, no surgery, no chemo. Just $287 and my good health." I think they could have charged me just about anything and I would have happily handed it over, big dumb smile plastered on my face, so lucky did I feel about knowing my life had magically gone back to normal. I know not everyone is so fortunate in that respect.

The first moral of this little story is that NO ONE should have bankruptcy or health coverage be their initial thought when their health and life are threatened. If you suddenly have an unexpected medical need, health care shouldn't suddenly be unavailable to you because you--GASP!--need it. As a nation, we've got to fix that.

The second moral is please make sure you get your pap smears and yearly exams, even if you don't have health insurance (if you can somehow manage it). Saving $287 today can cost you a whole lot more tomorrow. I surely won't be skipping one again.

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!

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!

The Speech, Remix Edition

Did you know I hate public speaking? Well, I do. And yet, today I spoke at a conference here in town about the expansion of our SCHIP program to include a buy-in program for families at 200%-300% of a federal poverty level, namely how such an expansion is not only socially responsible but also fiscally responsible for our state. It was an amazing gathering of people, important business leaders in our city and state, political figures, people from the medical community...it was just generally a really wonderful showing. It was also a room FULL of people and one small me, with a major case of stage fright. Somehow, though, I found my voice and stopped my knees from knocking long enough to squeak this out:

Hello, my name is Kyla [LastName] and in February of 2008 my daughter lost her health insurance. She had been covered by the Texas Children's Individual Health Plan which chose to close its program in early 2008. When I discovered we would have to find alternate coverage, I didn't expect any problems. I thought we could simply move to another individual insurance plan. When I actually applied for this coverage, I discovered that wasn't the case.

My daughter, [KayTar], has an undiagnosed neurological condition that affects several of her bodies' systems. It has caused brain lesions, debilitating neurological attacks, progressive hearing loss, a feeding disorder, sensory processing disorder, gross motor delays, muscle weakness, chronic constipation, asthma, and a higher rate of illness than typical children her age experience. She has needed developmental therapies to teach her to do the things that come naturally to most children, like walking, talking, and eating. She sees a team of physicians that treat her specific symptoms, and also continue to search for an underlying cause for her condition so we can treat her more effectively.

Although she is thriving in spite of it all, she is not the picture of a normal, healthy child, and she is too much of a risk for the insurance companies to accept. We were denied coverage. After being denied, we were referred to our state High Risk Pool, which was created for children like [KayTar], however, we are not eligible for this program because my husband's employer offers group coverage. Unfortunately for us, the group coverage is not an option either.

My husband's group plan would cost us 30% of our monthly income and we do not have 30% of our income to spare. On top of that, the insurance they offer is not comprehensive. None of [KayTar]'s therapies are covered; none of her genetic appointments or tests, and many of the things that are covered have stringent limitations. [KayTar]'s therapies alone cost over $400 per week. A single genetic laboratory test can cost well over $3,000. It does not make sense to pay nearly $1000 per month on an insurance plan that will not cover necessary testing and treatment.

Half of all working men and women do not have health insurance through their employer at all and many, like mine, cannot afford the coverage their employers offer. Because of this, [KayTar] was without vital therapies and specialized medical care for four months. During that time, multiple physician appointments were canceled and her therapies had to be discontinued.

Her feeding situation has declined so much so that she had a feeding tube surgically placed in November to help maintain her nutritional needs. However, while she was without coverage, we couldn't even take her in to see the physician in charge of this portion of her care and we were unable to continue the therapy that helps her develop the abilities that are necessary for eating. There simply are no treatments or therapeutic options for her without access to affordable, comprehensive healthcare coverage. Can you imagine what it is like to choose between your financial responsibilities and your child’s health?

My husband has worked as a network administrator for the same banking system for more than 5 years. He is a reliable employee; I can count the number of sick days he's taken on one hand. We pay our bills on time and take care of our taxes. We are financially responsible and more than willing to pay for our children's health coverage, this has never been the issue. The problem is that no one will give us the opportunity to do so. The only plan that is willing to cover my daughter and provide adequate coverage is our state CHIP plan, but we are $260 dollars over the monthly income limit for CHIP.

We had no other options when we contacted the Children's Defense Fund. We were at absolute end of our insurance search. Because we had no other viable options, my husband had even requested a pay cut to lower our income enough so that our children could qualify for coverage, but his employer never answered his request. I am happy to say that with the help of the Children's Defense Fund we were finally able to get our children into the CHIP plan, but to do so, we had to pay for unnecessary childcare to effectively lower our income enough to become eligible for the program.

While I am so thankful for this allowed deduction and believe it to be a great step forward, for our families like ours it should not be the only way to qualify for proper healthcare. We are not looking for something for nothing, we just want our children to have access to the care they need. We have always been willing to pay for this coverage, to pay into the system we are using, but unfortunately, no one will allow us to.

Our situation was further complicated in December after my husband received an automatic 3% cost of living raise. This put us $20.54 above the CHIP income cut off and once again he had to approach his employer and request that his pay be lowered. During the time it took to have his salary lowered, our children lost their insurance coverage again due to that negligible pay increase and we are currently awaiting their reinstatement into the program. It seems unbelievable that a cost of living raise can become a major crisis, but it is when our children's health hangs in the balance.

This can be changed and our state leaders can change it. I speak for our family and families like ours when I say we are willing and able to pay for our coverage, we just need to be given a real opportunity to do so. All children deserve access to proper health care, regardless of their health status or income. If the CHIP program could be modified so that families like ours could pay into the system to cover the cost of our children's care, it would go a long way toward bridging this very large gap. There are approximately 500,000 children in Texas who are uninsured and above the CHIP income level cut off, let's work together to lower this number.

And then I got a standing ovation. It was awesome and overwhelming.

I also had the opportunity to speak with a lot of amazing people and do quite a bit of hand shaking and receive an embarrassing amount of compliments. No one seemed to buy the whole, "This isn't my forte! I get incredibly nervous up there!" story. I even spoke with someone who thinks she will be able to get the kids' SCHIP restart date pushed up. She is working on it and hopefully we will hear something next week.

As much as it pains me to gear up for these speeches (and it DOES pain me, oh the anxiety!), I continue to do it because I believe it is so important to get our story out there, the story that hardworking, responsible people can be left without recourse, that sick children are denied coverage to the care they are so very dependent on, that this doesn't only happen to THOSE people, it can happen to you, because it happened to me. Our system is broken and there are innocent people tumbling through these very large cracks every day and like it or not, we are all paying for it, socially and fiscally...and in the end, these uninsured children are paying the highest price of all.

In the end, I'm always so pleased to have the opportunity to share our story and as soon as I'm done speaking and the anxiety dissipates, I'm extremely satisfied with the work we are doing and the outcome of conferences like this one. When the facts (like it would cost every taxpayer in our state only .90 each month to provide coverage for those 500,000 uninsured children in our state. NINETY CENTS!) are presented in a forum like this, it really does make and impact and I am proud to be a small part of advocating for an issue that is so important.


PS: If you are a local, I also did an interview that should air on Houston Public Radio on Monday morning during drive time. Lan Bentsen and Barbara Best were also interviewed and it should be really wonderful. Tune in if you are able!

[Almost] Weekend Update

1. School Drama.

It totally diffused itself. I spent all weekend and week studying SpEd laws and putting all of my ducks into carefully orchestrated little rows and then yesterday I received a phone call from the special education coordinator who said, "I spoke to my supervisor and if you can just get us a letter from your pediatrician stating that KayTar has an underlying medical reason for the frequent absences, that will take care of things." TA DA! I have a feeling that she brought up homebounding to her supervisor who quickly set her straight, but that is just my inference. Regardless of the reason, I WIN! She keeps her placement and I don't have to send notes for every.single.absence. (She's had two just this week, Monday for the allergic reaction and today for another fever.)

2. Allergic Reaction.

We are now a peanut-free household. Because trace amounts of peanuts from cross-contamination were the only commonality between the two reactions, and because it was the only allergen she showed a response to, that is thought to be the culprit. Me? I'm slightly terrified now, because if that was her reaction to TEENY TRACES from cross-contamination, what in the world will happen if she gets a hold of the real thing? (Don't answer that, I already know.) I'm already tempted to never sleep again after realizing she was reacting all night long and I didn't even think about that being a reason for her restlessness. The pediatrician's statement that "The good news is she didn't anaphylax while you were sleeping." is both comforting and terrifying because, OH MY GOD, what if she anaphylaxes while I'm sleeping?! Such peaceful thoughts to lull me to sleep.

3. Insurance.

As of Saturday, the kids lose their coverage. We've gotten everything worked out, except for the fact that Josh's HR department seems completely unable to do their jobs and although we've been asking for certain paperwork for WEEKS, they still haven't done it. Urgent and time sensitive are foreign concepts to them, evidently, so my kids are going to lose insurance coverage, at least until our appeal can be processed. We filed it today, with absolutely no help from his HR department, so the coverage will lapse during the time it takes them to process the appeal. It is resolvable, thankfully, but it would have been taken care of weeks ago if his employer would have put in one teeny, tiny ounce of assistance. I'm clearly not bitter, but I may have said something to the effect of, "I WILL THROTTLE THEM!" when he told me that although they told him last week they had faxed the proper information, yesterday after he left them several messages, they emailed him and sheepishly said, "Can we get the mailing address, too, so we can send a hard copy WHEN WE FAX IT." making it clear that they actually never faxed the information and just told him that to make him stop asking. But no, I am clearly not bitter about this or the fact that if they just offered comprehensive AFFORDABLE insurance, we wouldn't be jumping through these hoops at all. Not bitter.

4. Sick, sick, sick.

KayTar is sick again. SHOCKER. It looks like another upper respiratory infection, her illness of choice, but I think we're going to go see the pediatrician today to be on the safe side, since as of Saturday she is no longer insured. (NOT BITTER, THOUGH.) Josh is once again relegated to the land of fairies and princesses. It keeps the magic alive only getting to sleep in the same bed every couple of weeks or so. ;) KayTar talked my ear off all night long, as she does when her fever spikes, exclaiming things in her sleep, "Stylish! I'm so stylish!", having conversations with me while she was awake, and dramatically overreacting when I had to use the bathroom, "But WHY, Mom? WHY did you LEAVE ME?!". Thank God for coffee.

10 Small Miracles

1. The kids will not lose insurance coverage until January 31st at the earliest. (if Josh's boss is agreeable, or if I can find a job with good benefits in that time frame, they won't lose it at all.)

2. An angel sent me a gift in the mail this weekend that made a lot of things possible for our Christmas that would not otherwise be so. It was one of those moments that knocks you flat on the floor by how thoughtful and kind people can be and makes you believe in Santa all over again.

3. My husband slept in my bed last night. Oh, yes he did. Unfortunately, all we did was sleep due to the number of cold and decongestant medications we had ingested for our shared head cold.

4. My semester is over. I survived what was definitely my most challenging semester academically and personally thus far.

5. IT SNOWED LAST WEEK! REAL SNOW! (seems impossible, as I wore a tank top yesterday)

6. I made an A on my Microbiology final. (that is an A+ to you Canadians with your crazy grading scale) I haven't gotten my other grade yet.

7. KayTar got sick last week and it was a totally NORMAL kid illness. The first night was rough, but she only missed 1 day of school and it never escalated!

8. The granulation tissue is shrinking! (Josh calls it "The Dude" because he is terrible with medical terminology. He kept making up fancy words when he would ask about it, so finally he just went with "The Dude" as in, "How is The Dude looking today?")

9. KayTar ate CHEESE! She snuck into the fridge and snitched some shredded Italian cheese. She has never, ever eaten cheese. She told me, "I ate cheese! It was delicious!" I called Josh to tell him and KayTar overheard me talking about it and gave me this spastic wink and a big thumbs up. Adorable.

10. Josh and I went on a DATE this weekend. A date!

Read all about it!

Special Interest

A man recently received an automatic 3% cost of living raise and it has thrown his family into a crisis situation. This small raise puts his family income roughly $20.54 above the SCHIP income guideline for his state. His daughter is uninsurable by private insurance standards due to multiple health conditions, and the family had exhausted all options before working to get their children enrolled in the SCHIP program. His wife works with the Children's Defense Fund, sharing their story in hopes that people will listen and see the need for changes within our state and national children's insurance programs. One of the most sought after changes is a buy-in program, so that families above the income guideline but unable to financially or medically qualify for private insurance, have an option. If this legislation goes through in the next session, she will feel satisfied knowing no other families will have to experience what hers has had to experience, not once, but twice, this year. The family has not lost their coverage yet, and are currently hoping for a Christmas miracle as the man speaks with his boss once again about the financial aspect of the problem. The first time the man requested a pay cut, he was ignored despite explaining the tenuous at best situation of his daughter and her medical needs. The second time he was told no. We all wonder, can they be so cold hearted as to deny him a third time, especially around the holidays? We wait with bated breath to find out.

Health

A young girl named KayTar had multiple surgeries in early November. Her recovery was easy despite persistent antibiotic-induced diarrhea, but the week of Thanksgiving, she developed a MRSA infection at her biopsy site. MRSA, or methicillin resistant staphylococcus aureus, is quite aggressive and had her parents wondering if they might be spending the holiday in the hospital. Thankfully, the oral antibiotics turned the tide just in time and the family escaped such a fate. Late last week, she began to develop granulation tissue around her stoma site. Granulation tissue is fibrous connective tissue that develops outside of the body, in an attempt to close a wound the body feels should not be there, such as a stoma from a g-button. Friday it was barely visible and by Sunday night, it was almost interfering with the ability to close the button effectively. This is being treated with a round of topical steroids which will hopefully heal it nicely. If not, it may be treated by chemical cautery with silver nitrate. Yesterday, for the first time since her surgery, the young girl has fallen ill. This morning her first words were reported to be, "I fink I'm going to throw up." Her parents are interested to find out if this recent run of health can be attributed to a successful surgery or if it is due to the near nonstop antibiotics the girl has been on since her surgeries a little over a month ago. Only time will tell, but something tells me this might be the first of the many infections she will experience throughout cold and flu season.

Food

A hunter recently brought home his conquest and decided to make jerky. He slaved over the dehydrator all day long, just waiting for a taste of his delicious trophy. Evening came and it was finally finished. He put it into a ziploc bag and left it on the kitchen counter to cool. The hunter then laid down on the sofa and quickly fell asleep. Hours later, he awoke. He could not find the jerky anywhere. He inquired of his son, "Where is the jerky?" He claimed, "On the counter, I only took one piece!" The man could not find the bag of jerky, but this is typical. The hunter might be able to stake out animals, but he is wholly unable to find things in his native environment. His wife sighed with exasperation. "I'll find it." She had to look no farther than where she stood, though. On the floor was an empty ziploc bag, with a small hole torn in it. "I found it. It is on the floor." Realization dawned on the hunter's face, "Nooooo. Nononononono! CAT! DOG! NOOOO!" The delicacy of his handiwork, stolen and eaten by a cat and dog who understand the true power of teamwork. The hunter mourned his great loss and can still be heard mumbling under his breath, "Stupid cat. Dang dog." many times each day.

Education

We attempted to interview a local college student about her upcoming finals, but she just stared at us with her crazy, twitching, exhausted eyes and handed us this photo before stumbling towards the nearest coffee shop. On the back she had scrawled, "And this is only ONE of the stacks." That says it all, doesn't it?

With/Without

The cost of KayTar's medications with insurance coverage:

Zofran (generic).............$5.00
Bactrim (generic)...........$5.00
Albuterol....................$20.00
Vusion.......................$20.00
Bactroban (generic).........$5.00

Total: $55.00

The cost of KayTar's medications without insurance coverage:

Zofran (generic).............$269.99
Bactrim (generic).............$17.99
Albuterol.......................$36.99
Vusion.........................$251.99
Bactroban (generic)..........$44.99

Total: $621.95

Says it all, doesn't it? (except for the doctor's visits, feeding supplies, Pediasure, therapies, occasional tests and hospitalizations, the chance that her tube pops out and we need a new one immediately....well, you get the idea...)



PS: If you are new to this portion of our story, clicking the insurance label at the bottom of this post will fill you in on the rest.

****

Funny story, I got an email from someone at the CDF yesterday asking about the kid's losing their coverage. Do you know how they found out? THE BLOG! They are brainstorming about solutions, but in the meantime, we've stocked up on KayTar's medications and are getting ready for what seems to be inevitable. We'll make due, just like last time, but I really wish we weren't in this position, especially right before the holidays.

Guess what?

Yesterday, I got an envelope in the mail from SCHIP. It was addressed to KayTar, but it didn't look like one of the many little FYI letters the insurer sends out (Be on the lookout for bee stings! Don't forget to have your child immunized!). I opened it and was surprised to find a new card for her. We already have her card and a back up, actually, so I was a little confused. I had panicked for a split second, worried that they had changed her PCP (our beloved pediatrician) and this was our notification, so I quickly scanned the card for changes. And I found this:

Copays:

OV (office visits): $0

ER: $0

InP (in-patient hospitalization): $0

RX (generic/brand): $0

In the 3 months she's had insurance, we've spent her out of pocket maximum. Now everything is free until next July. That includes pediatrician visits, specialist visits, tests, labs, ER visits, medications, Pediasure, hospitalizations, durable medical equipment, and SURGERY. Everything will cost us $0. What timing! As my wise friend Katie pointed out,"God said, 'DO THE SURGERY NOW KYLA.'"

Message received.

The magazine is out! (Now with link!)

Look, it is us holding a magazine with us in it! Trippy! And exciting!


The article was great, so go check your newsstands! Buy it! Read it! Hold our glossy little magazine faces in your very own hands!

And then come back and let me know what you think!


PS: It is the SELF magazine September issue, with J-Lo on the cover.
Or just click here!

Tomorrow,

My kids will be insured.


Tomorrow, KayTar will be able to restart therapies...

Occupational

Speech

Physical


Tomorrow, I will be able to make the appointments we've been waiting on...

Feeding clinic

Ophthalmologist

Orthopedist

Dentist

Audiologist


Tomorrow, if the kids get sick we won't have to worry about the cost of...

Office visits

Prescriptions


Tomorrow, I will finally be able to exhale.

My kids are [almost] insured!

Late this afternoon, the mailman dropped a packet in my mailbox. In the packet was a letter that said:

"The following person(s) are eligible to enroll in the Children's Health Insurance Program:

BubTar
KayTar"

We've been waiting on this news for a while. The CDF found a loophole and we exploited it and we've been in limbo waiting to find out if it would work. It was the last hope, honestly. If you are in the same situation we have been in and you'd like to know more about said loophole, feel free to email me, but I don't want to go into detail on the blog. Suffice it to say, the system wouldn't work for us, so we worked the system.

I have to pay the enrollment fee and send in one piece of paper and these kids of mine should be all set. I could not be happier...I mean, unless the system wasn't so broken that we had to find a deceptive back door, that might have made me happier. But I'm still ecstatic.

In other news, KayTar went to camp today. It was her first day away from me in years and she did excellently. And then? She told me about her day. She told me that she:

Put on costumes, an elephant, tiger, and dinosaur

Did "arting" meaning she painted black stripes on orange paper, tiger stripes, and her teacher asked if she was done and she WAS done

Played outside, a game involving throwing, a cone, and a ring

Singing, the monkey song and a song from the Jungle Book

Watched part of Toy Story

Played with all of those kids

She was so excited and she is ready to go back tomorrow.

It has been a most excellent day.

PS: I owe you all a thorough NYC report, but I am running on borrowed time lately. Tomorrow I hope I have the time to get it knocked out. It was a great trip.

Cover the Uninsured!

Today is the last weekday of the nationwide Cover the Uninsured week. This is so important because 47 million Americans are currently uninsured. Nearly 9 million of those uninsured Americans are children, like mine. More than 8 out of 10 are in working families, just like ours. Because this is such a huge week for drawing attention to this enormous need, I asked my good friend Julie if she would mind using her wonderful contacts and skills to pull together a little blog series on the subject, and she agreed!

Please head over to Moms Speak Up today to read all the great stuff that will be rolling out as the day goes on. Please feel free to leave your thoughts and support as well, even you Canadians. People are always interested to hear about experiences with your health care system, because there are so many incorrect assumptions made about it. My contact from the CDF, Laura Guerra-Cardus, agreed to do an interview for the blog, so make sure to check that out, too. She's amazing and kind and so incredibly knowledgeable about the subject at hand. It will be enlightening, I assure you. This is also her first real experience with blog media, so let's make her feel welcome!

As posts roll out, I'll try and keep this post updated with a list so you can just click on through.

The Posts:

Cover the Uninsured: A National Campaign for Healthy Kids

Interview with Laura Guerra-Cardus If you only have time for one post, read this one!

Making it Personal Our story, which you are all pretty familiar with!

Also, I'd like to point you towards a few of the organizations I had the pleasure of working with this week. Great things are happening and these people are on the front lines of it all.

The Children's Defense Fund

Texas Kids Win

Texans Care for Children

Center for Public Policy Priorities

Pssst...Julie's main post is up on the front page of BlogHer, in the headlines section! Stop by and lend some support!

Hi. I'm Kyla from the paper.

There is something surreal about finding out you are in statewide newspapers before you have even had a chance to blog your own story!

Surreal.

So, yes. Yesterday, I did. I spoke at the Capitol in front of legislators and reporters. And I didn't die. The woman who was supposed to go first asked if I would go first, just to be sure "blood didn't start coming out of my ears or [I] didn't drop dead". Luckily for us both, that didn't happen. It was the most amazing experience. Everyone I had the pleasure of meeting was just wonderful. It was a good feeling to be surrounded by people who believe in the same things, everyone working together towards these very important changes. Everyone, even the Senator who was present, spoke with me afterwards, shook my hand, shook their heads at the injustice of it all, and told me I did well.

And today? I did it again, here in my town, in front of different cameras and our State Representatives. And as I introduced myself to someone, she said, "Oh! You're Kyla from the paper!" and that is how I discovered I made the paper today, not only our local paper, but papers all over our state. It is really quite overwhelming and amazing at the same time. The story is getting out there and that is what is important.

I can't thank you all enough for the support. Really, I don't think I could have ever done this without all of you standing behind me. So thank you.

The Speech

Hello, my name is Kyla [LastName] and on March 1st, 2008, my children became part of the 1.5 million uninsured Texas children. My daughter had been covered by the [Previous Insurance] Plan which closed its program at the end of February. When we discovered we would have to find alternate coverage, I optimistically assumed that HIPAA would protect her and we could simply move to another individual insurance plan. When we actually applied for this coverage, I discovered that wasn't the case. You see, KayTar is not a typical, healthy three year old. She has undiagnosed neurological attacks that are incapacitating and can last for up to 11 hours. She is deaf in one ear and has to have bi-annual hearing tests to be sure her hearing hasn't further deteriorated. In her short life, she has had two MRIs, two CT scans, two lumbar punctures, and three EEGs. Before losing her insurance coverage, she was in developmental, occupational, physical, and speech therapies because of her developmental delays. She sees a geneticist, neurologist, feeding disorders specialist, gastroenterologist, ophthalmologist, audiologist, otolaryngologist, her regular pediatrician, and was due to see an orthopedist prior to losing her insurance coverage. She has been in the ER six times for various issues. She has been hospitalized twice. She is on daily medications for chronic constipation and asthma. Although she is thriving in spite of it all, she is not the picture of a normal, healthy child, and she is too much of a risk for the insurance companies to accept. We were denied coverage. After being denied, we were referred to the High Risk Pool, which was created for children like KayTar, however, we are not eligible for this program because my husband's employer offers group coverage. Unfortunately for us, the group coverage is not an option either.


My husband's group plan would cost us 30% of our monthly income and we do not have 30% of our income to spare. On top of that, the insurance they offer is not comprehensive. None of KayTar's therapies are covered; none of her genetic appointments or tests, and many of the things that are covered have stringent limitations. KayTar's therapies alone cost over $400 per week. A single genetic blood test can cost well over $3,000. It does not make sense to pay over $900 per month on an insurance plan that will not cover necessary testing and treatment. Half of all working men and women do not have health insurance through their employer at all and many, like mine, cannot afford the coverage their employers offer. Because of this, KayTar has been without vital therapies and specialized medical care for two months. In that short amount of time, I’ve had to cancel her hearing test. I’ve had to cancel a crucial appointment with her feeding disorder specialist. A few months ago her feeding situation had declined so much so that we were beginning to discuss the possibility of a feeding tube, and now I cannot even take her in to see the specialist who can help her overcome these obstacles. If things were to decline further, we have no safety net. There are no treatments or therapeutic options for her without health insurance. We can’t even afford for her to be seen in the feeding clinic without insurance coverage. Due to recent changes in her neurological episodes, the pediatrician recommended another MRI, but that will also have to wait until we find a solution to our health care crisis. Since losing our insurance coverage just two short months ago, my daughter already lacks her necessary medical care, because we do not have access to affordable, comprehensive coverage. Can you imagine what it is like to choose between your financial responsibilities and your child’s health?

My husband has worked as a network administrator for the same banking system for over five years. He is a reliable employee; I can count the number of sick days he's taken on one hand. We pay our bills on time and take care of our taxes. We are financially responsible and more than willing to pay for our children's health coverage, this has never been the issue. The problem is that we don't have the option to do so. The only plan that will accept my daughter and offer her adequate coverage is the state CHIP plan. Unfortunately we are $260 dollars over the monthly income limit set for CHIP. Because we have no other viable options, my husband has requested a pay cut in that amount, so that our children can qualify for proper health coverage. Not only will this decrease our monthly income, it will also cap him out at work. He will no longer be eligible for raises or positional promotions. It shouldn't be this way; my husband should not have to handicap his career to provide for his children. Families who are willing and able to pay for adequate coverage should be allowed to do so, especially when the children have a serious need for comprehensive coverage.

This can be changed and our state leaders can change it. I speak for our family and families like ours when I say we are willing and able to pay for our coverage, we just need to be given a real opportunity to do so. All children deserve access to proper health care, regardless of their health status or income. If the CHIP program could be modified so that families like ours could pay into the system on a sliding scale to cover the cost of our children's care, it would go a long way toward bridging this very large gap. There are 487,000 children in Texas who are uninsured and above the CHIP income level cut off, let's work together to lower this number. Mohandas Gandhi said "We MUST be the change we want to see in this world." Today I stand before you and ask you to be the change my child desperately needs to see in this world. Do it for her, and the thousands like her. Do it because it is the right thing to do.


****

Tomorrow I'll be on my way before the sun comes up. EEK!