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!
Thursday, May 28, 2009
Wednesday, May 27, 2009
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.
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.
Tuesday, May 26, 2009
Clusterduck.
BubTar has been attending a private Christian school since he started PreK. Josh grew up in Christian school and I attended as a high school student. When we started our family, we thought that Christian school would be a given for our kids. Over the years, we've sacrificed a lot to keep BubTar enrolled there, possibly more than we should have, and this year we didn't have the greatest experience. His teacher was nice, but for a multitude of reasons, we were never comfortable with her. We decided to keep our heads down and just get through the year, because the situation wasn't terrible...it just wasn't ideal. It turns out, his school is going through major changes in the administration and his current teacher will be the elementary principal, starting next year. This was the catalyst for many, many discussion between Josh and I, as well as discussions with friends who are teachers or have children in public or private schools. After weighing all the pros and cons, we decided to transfer BubTar to public school next year.
We've had a phenomenal experience with KayTar's school this year, both with her teachers and the administration, and after that experience there just aren't enough reasons to keep BubTar in an environment we are less than happy with and pay quite a bit for. The benefits are clear; two children on one local campus, volunteering at one campus, drop off and pick up consolidation, one set of rules and one calendar for both kids, uniforms that don't cost a small fortune, the absence of tuition, and so forth. Our biggest concern was that BubTar will be significantly ahead of his peers in academics. I've spoken to the principal at KayTar's school and she said he would be placed in a dedicated GT classroom to keep him challenged, which we prefer to having him move up a grade level. For our family, right now, this seems to be the best decision.
However, at KayTar's ARD (Admission/Review/Dismissal meeting, for those of you who don't speak the SPED lingo) they told us that she might be transferring to a new elementary next year, for the advanced PPCD program. Last week, I spoke with the director of PPCD and she said that it is a certainty, not merely a possibility. KayTar will be attending the new program in the fall. It sounds wonderful, 6 special education students, 11 general education students, and full time general education and special education teachers, as well as an aide. The classroom is a partnership with Head Start and KayTar might be able to attend the second half of the school day there, too. It sounds like the perfect environment for her and I'm thrilled that she is one of the six students they selected. However, she will be at a new campus with new teachers and administrators and I am a little sad to be leaving her current campus behind. They have been wonderful! Because she will no longer be at our local campus, this means that unless we can get a transfer waiver for BubTar, they will still be on two separate campuses next year. If we can get a transfer worked out, then we still have to worry about proper placement with his advanced academic status. I'm waiting to head back from the principal about all of this.
The majority of my time lately has been consumed by trying to get a rather large number of ducks into their respective rows. My summer classes, financial aid, and scheduling row (this has been a hot mess, but seems to be almost taken care of). The kids' daytime summer schedule row (VBS, K's art camp, summer curriculum). Our family's evening schedule row, combining my schedule (out of the house 4 nights a week), the kids' activities (swim team 3 nights per week), and Josh's availability (he wishes he could say he was unavailable more often, I'm sure). My volunteer commitment row (orientation, interview, health screening, training, THEN volunteering weekly). Summer vacation row (how to squeeze a vacation into all of this). My fall term schedule row (much easier than summer, so far). The kids' school placement row (see above). Ducks and rows, ducks and rows. In less than two weeks, school will be out for the kids, summer activities will have started, I'll be in classes 3 nights each week and my volunteer commitment will have begun...I hope these ducks are in their rows by then, because I'm not going to have any time left to organize them!
We've had a phenomenal experience with KayTar's school this year, both with her teachers and the administration, and after that experience there just aren't enough reasons to keep BubTar in an environment we are less than happy with and pay quite a bit for. The benefits are clear; two children on one local campus, volunteering at one campus, drop off and pick up consolidation, one set of rules and one calendar for both kids, uniforms that don't cost a small fortune, the absence of tuition, and so forth. Our biggest concern was that BubTar will be significantly ahead of his peers in academics. I've spoken to the principal at KayTar's school and she said he would be placed in a dedicated GT classroom to keep him challenged, which we prefer to having him move up a grade level. For our family, right now, this seems to be the best decision.
However, at KayTar's ARD (Admission/Review/Dismissal meeting, for those of you who don't speak the SPED lingo) they told us that she might be transferring to a new elementary next year, for the advanced PPCD program. Last week, I spoke with the director of PPCD and she said that it is a certainty, not merely a possibility. KayTar will be attending the new program in the fall. It sounds wonderful, 6 special education students, 11 general education students, and full time general education and special education teachers, as well as an aide. The classroom is a partnership with Head Start and KayTar might be able to attend the second half of the school day there, too. It sounds like the perfect environment for her and I'm thrilled that she is one of the six students they selected. However, she will be at a new campus with new teachers and administrators and I am a little sad to be leaving her current campus behind. They have been wonderful! Because she will no longer be at our local campus, this means that unless we can get a transfer waiver for BubTar, they will still be on two separate campuses next year. If we can get a transfer worked out, then we still have to worry about proper placement with his advanced academic status. I'm waiting to head back from the principal about all of this.
The majority of my time lately has been consumed by trying to get a rather large number of ducks into their respective rows. My summer classes, financial aid, and scheduling row (this has been a hot mess, but seems to be almost taken care of). The kids' daytime summer schedule row (VBS, K's art camp, summer curriculum). Our family's evening schedule row, combining my schedule (out of the house 4 nights a week), the kids' activities (swim team 3 nights per week), and Josh's availability (he wishes he could say he was unavailable more often, I'm sure). My volunteer commitment row (orientation, interview, health screening, training, THEN volunteering weekly). Summer vacation row (how to squeeze a vacation into all of this). My fall term schedule row (much easier than summer, so far). The kids' school placement row (see above). Ducks and rows, ducks and rows. In less than two weeks, school will be out for the kids, summer activities will have started, I'll be in classes 3 nights each week and my volunteer commitment will have begun...I hope these ducks are in their rows by then, because I'm not going to have any time left to organize them!
Saturday, May 23, 2009
The winners are...
A big thanks to Ridemakerz (and our fabulous pediatrician) for providing the gift cards for this giveaway and to Random.org for its works as my lovely number-selecting assistant.
Wednesday, May 20, 2009
Wordless Wednesday: Name
Now I just have to teach her to write her pseudonym! ;)
Tuesday, May 19, 2009
Eight years ago today...
This kid...
married this kid...
who happened to be wearing sneakers.
They kissed...
and cut the cake.
She might have been a little too generous with his bite of cake.
Then they shared a cakey kiss...
and made a toast to the rest of their lives.
Eight years later, I still love sneakers, cake, and YOU, Josh. Happy anniversary! Here's to many more wild and wonderful years.
married this kid...
who happened to be wearing sneakers.
They kissed...
and cut the cake.
She might have been a little too generous with his bite of cake.
Then they shared a cakey kiss...
and made a toast to the rest of their lives.
Eight years later, I still love sneakers, cake, and YOU, Josh. Happy anniversary! Here's to many more wild and wonderful years.
Monday, May 18, 2009
Special Sunday: Ridemakerz
Special Sundays are usually chosen by one of the kids and uninfluenced by Josh or I, but when I was invited to a Ridemakerz promotional party, I offered it up as a suggestion for BubTar's day yesterday. He accepted, though, he did try to talk me into control of next Sunday, just to see if it might work.(it didn't work.) The kids have been looking forward to it all week, but unfortunately, KayTar got sick Saturday and she and Josh had to miss out on the fun! I invited our pediatrician and her kids along, but due to scheduling, they were only at partial capacity, too. It ended up just being she and I and our oldest boys. We still had a great time and we were able to make cars for the missing members of our party! We were assigned a crew member who walked us through the store, directing us to chose our parts and then showed up how to assemble them.
On KayTar's behalf, I chose (we had looked it up online beforehand):
Pink car body
Street chassis with R/C
Yellow tattoo wheels
Daisy rims
Heart-shaped grill
Silver spoiler
Purple neon lights (underneath)
Flower, butterfly, and turtle decals
BubTar chose:
Red fire truck body
Monster truck chassis with R/C
Flame wheels
Cyclone rims
Emergency vehicle lights
Dump truck kit
Exhaust pipes
Side pipes
We encountered one minor problem, although KayTar's lights and music worked at the store, we didn't test the R/C capability until we got home and it turns out her chassis was defective! Taking the brand new toy away from a sick kid who already had missed out on all of the fun went over about as well as you might imagine, but the guys in the store fixed us right up and I was able to deliver the car back to its owner in working condition. All of the kids are LOVING their cars and although there IS an available online counterpart to race their cars, mine strongly prefer the real thing, which is increasingly rare these days!
I'm thrilled we had the chance to create these custom cars and Ridemakerz gave me the chance to pass along the same opportunity to not one, but TWO lucky readers. Actually, Ridemakerz gave me the first $100 gift card and our fabulous pediatrician donated her $100 gift card to be given away here, too. To enter, all you need to do is leave a comment on this post now through 11:59PM Friday, May 22nd, with a valid email address in your comment. One entry per valid email address, please! Open to residents of US and Canada. You also need to be willing to send me your mailing address if you are selected as a winner. I'll contact the two winners via email and announce them here on Saturday.
If you do not have a Ridemakerz store nearby, never fear, you are still able to build a car online and have it shipped to your home (they do ship to Canada, as well, for an additional cost). KayTar and I utilized this feature to build her virtual car beforehand, so I knew which parts she wanted once I got to the store. It was very user-friendly and set up much like the store itself. Of course, you don't get the hands-on, build it yourself satisfaction, but you'll still get a really cool car.
On KayTar's behalf, I chose (we had looked it up online beforehand):
Pink car body
Street chassis with R/C
Yellow tattoo wheels
Daisy rims
Heart-shaped grill
Silver spoiler
Purple neon lights (underneath)
Flower, butterfly, and turtle decals
BubTar chose:
Red fire truck body
Monster truck chassis with R/C
Flame wheels
Cyclone rims
Emergency vehicle lights
Dump truck kit
Exhaust pipes
Side pipes
We encountered one minor problem, although KayTar's lights and music worked at the store, we didn't test the R/C capability until we got home and it turns out her chassis was defective! Taking the brand new toy away from a sick kid who already had missed out on all of the fun went over about as well as you might imagine, but the guys in the store fixed us right up and I was able to deliver the car back to its owner in working condition. All of the kids are LOVING their cars and although there IS an available online counterpart to race their cars, mine strongly prefer the real thing, which is increasingly rare these days!
I'm thrilled we had the chance to create these custom cars and Ridemakerz gave me the chance to pass along the same opportunity to not one, but TWO lucky readers. Actually, Ridemakerz gave me the first $100 gift card and our fabulous pediatrician donated her $100 gift card to be given away here, too. To enter, all you need to do is leave a comment on this post now through 11:59PM Friday, May 22nd, with a valid email address in your comment. One entry per valid email address, please! Open to residents of US and Canada. You also need to be willing to send me your mailing address if you are selected as a winner. I'll contact the two winners via email and announce them here on Saturday.
If you do not have a Ridemakerz store nearby, never fear, you are still able to build a car online and have it shipped to your home (they do ship to Canada, as well, for an additional cost). KayTar and I utilized this feature to build her virtual car beforehand, so I knew which parts she wanted once I got to the store. It was very user-friendly and set up much like the store itself. Of course, you don't get the hands-on, build it yourself satisfaction, but you'll still get a really cool car.
Friday, May 15, 2009
The ARD
It was lovely! Who wouldn't love to sit in a meeting and hear teachers and administrators gush about your child? Of course I think she is brilliant, adorable, and hilarious, but it is nice to know everyone else does, too!
She has made excellent progress with her goals for this year, though, she hasn't quite mastered all of them (hello, potty training!). I can hardly believe this too-smart-for-her-own-good chatterbox was only speaking in exact quotes, unable to answer questions at this time last year. It doesn't even seem possible! We discussed her new goals, which I can give in more detail once I get my copies of the meeting, and set up her accommodations for next year.
She may be changing campuses next year, which makes me a little sad as I have LOVED everyone we've encountered at her current campus, but the opportunity sounds like a good one. They are setting up an advanced PPCD classroom for the district, so the kids who naturally excel, but also need special education services can meet their IEP goals while being challenged beyond the scope of those goals. There will be a special education teacher and a general education teacher present at all times and the class will be a mixture of high functioning special education students and general education peers. KayTar was nominated for being such a little smarty-pants. This will be the first year for the program and they aren't certain it will get off the ground in time, in which case she will stay at her current campus with her current teachers.
I know many parents have trouble with their children getting appropriate service and placement, but (with the exception of that little attendance issue earlier this year) we have had a WONDERFUL experience with KayTar's school and our district. The administration and staff have been friendly and helpful, and everyone knows and loves KayTar. You just can't resist that kid!
This is her school picture. As we waited to go into her ARD, the front office worker asked her, "KayTar, did you show your mom your picture yesterday? I saw it when it came through the office and it was so beautiful!" KayTar made eyes at her and said, "And, did you think I looked just FABULOUS?!" The entire lobby erupted into laughter. She sure is something.
She has made excellent progress with her goals for this year, though, she hasn't quite mastered all of them (hello, potty training!). I can hardly believe this too-smart-for-her-own-good chatterbox was only speaking in exact quotes, unable to answer questions at this time last year. It doesn't even seem possible! We discussed her new goals, which I can give in more detail once I get my copies of the meeting, and set up her accommodations for next year.
She may be changing campuses next year, which makes me a little sad as I have LOVED everyone we've encountered at her current campus, but the opportunity sounds like a good one. They are setting up an advanced PPCD classroom for the district, so the kids who naturally excel, but also need special education services can meet their IEP goals while being challenged beyond the scope of those goals. There will be a special education teacher and a general education teacher present at all times and the class will be a mixture of high functioning special education students and general education peers. KayTar was nominated for being such a little smarty-pants. This will be the first year for the program and they aren't certain it will get off the ground in time, in which case she will stay at her current campus with her current teachers.
I know many parents have trouble with their children getting appropriate service and placement, but (with the exception of that little attendance issue earlier this year) we have had a WONDERFUL experience with KayTar's school and our district. The administration and staff have been friendly and helpful, and everyone knows and loves KayTar. You just can't resist that kid!
Wednesday, May 13, 2009
I'm outsmarted, daily.
KayTar has learned the "Here comes the bride, big, fat, and wide!" song from her brother and just looooves to sing it. We're not so fond of it and have been discouraging it. "It isn't a very nice song, KayTar." we say. A few days ago, she prefaced the song with, "Okay Mom, I'm not singing this to you or Daddy or BubTar or ANYONE. I'm singing it about the HOUSE, because this house is SO FAT!"
How do you argue with that?
****
KayTar: I have to pee.
Me: Want to sit on the potty?
KayTar (wearing butterfly wings): No, butterflies don't use a toilet, Mom.
They sure don't.
****
KayTar: Can you change me into my princess dress?
Me: KayTar, I really don't want to change your clothes a hundred times again today.
KayTar: Please? It would make me SO happy AND I will give you this penny--well, actually it is a FAKE penny--but I will still give it to yoooooou.
Somehow, that actually worked.
****
Me: KayTar, do you have a dirty diaper?
KayTar: Yeah. Are you happy I told you I pooped? (she has a habit of lying about it)
Me: Yes, but I would be happier if you just pooped in the potty.
KayTar: But, you are still happy. That's a COMPROMISE.
We are clearly in trouble.
How do you argue with that?
****
KayTar: I have to pee.
Me: Want to sit on the potty?
KayTar (wearing butterfly wings): No, butterflies don't use a toilet, Mom.
They sure don't.
****
KayTar: Can you change me into my princess dress?
Me: KayTar, I really don't want to change your clothes a hundred times again today.
KayTar: Please? It would make me SO happy AND I will give you this penny--well, actually it is a FAKE penny--but I will still give it to yoooooou.
Somehow, that actually worked.
****
Me: KayTar, do you have a dirty diaper?
KayTar: Yeah. Are you happy I told you I pooped? (she has a habit of lying about it)
Me: Yes, but I would be happier if you just pooped in the potty.
KayTar: But, you are still happy. That's a COMPROMISE.
We are clearly in trouble.
Sunday, May 10, 2009
Happy Mother's Day
Two years ago she was just learning to sign and now she's reading poetry to me. I can't believe how far she's come!
Friday, May 08, 2009
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!
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!
Tuesday, May 05, 2009
If KayTar was a blogger...
Yesterday KayTar had a neurologist appointment and while we were at the hospital, we also had her labs run (a new RAST level for her nut allergy). At check-in, she asked me, "What are we doing here?" And I said, "I don't really want to tell you yet. I'll tell you in a little while, though." To which she replied, "Ooooh! Is it a SURPRISE! I love SURPRISES!" which made it clear that I would have to tell her, because a needle stick is a rather unpleasant surprise and I don't want to ruin the reputation of surprises altogether. "Well, KayTar...you have to get a little poke, but THEN YOU CAN HAVE A TREAT!" Alas, the cat was out of the bag and the laboratory waiting area was packed. We would have a long wait with a child who knew that she was about to get the needle.
In an effort to keep her mind off of the looming POKE, I pulled out her notepad and wrote a sentence in it, "KayTar is 4 years old and she likes flowers and butterflies." She loved reading about herself in her book and read the sentence several times. Then she pondered it for a minute and said, "You forgot something. Write this, 'She wears diapers.'" So I wrote it.
There was a very small baby sharing the bench seat with us and he was wearing a baby t-shirt with a blue, smiling whale on it. KayTar admired it and then said, "Write this in my book, 'KayTar likes whales.' Wait! Say THIS, 'KayTar likes HAPPY whales. And mermaids.' No, wait! 'KayTar likes happy whales and ARIEL.' Yeah, write that."
Then she said, "Oh! Start a new story! Say this, 'Dr. Neuro lost his clacker. His dog ate it or a kid broke it.' That's a GREAT story." (KayTar was looking forward to playing with his clacker, those plastic clapping hands that clack together, but sadly he no longer had a clacker. He first told her that his dog ate it, then he said maybe another kid broke it.)
The next time she got worked up about the threat of the needle, I suggested we write in the book some more, "What else can you think of that we should write?" And she said, while quietly sobbing, "You should write, 'Poke.'" I asked, "Anything about the poke? Should I write, 'KayTar doesn't like pokes'?" She said, "No, just write 'Poke.' and make it BIG." And that is how her story ended.
The author peers out from behind her laptop.
PS: It is NOT mitochondrial disease. Although she has more mitochondria than your averagebear four year old, the rest of her tests checked out okay. The neurologist said he doesn't really know what else we can test for, so it looks like we've come to the end of another road without any answers.
In an effort to keep her mind off of the looming POKE, I pulled out her notepad and wrote a sentence in it, "KayTar is 4 years old and she likes flowers and butterflies." She loved reading about herself in her book and read the sentence several times. Then she pondered it for a minute and said, "You forgot something. Write this, 'She wears diapers.'" So I wrote it.
There was a very small baby sharing the bench seat with us and he was wearing a baby t-shirt with a blue, smiling whale on it. KayTar admired it and then said, "Write this in my book, 'KayTar likes whales.' Wait! Say THIS, 'KayTar likes HAPPY whales. And mermaids.' No, wait! 'KayTar likes happy whales and ARIEL.' Yeah, write that."
Then she said, "Oh! Start a new story! Say this, 'Dr. Neuro lost his clacker. His dog ate it or a kid broke it.' That's a GREAT story." (KayTar was looking forward to playing with his clacker, those plastic clapping hands that clack together, but sadly he no longer had a clacker. He first told her that his dog ate it, then he said maybe another kid broke it.)
The next time she got worked up about the threat of the needle, I suggested we write in the book some more, "What else can you think of that we should write?" And she said, while quietly sobbing, "You should write, 'Poke.'" I asked, "Anything about the poke? Should I write, 'KayTar doesn't like pokes'?" She said, "No, just write 'Poke.' and make it BIG." And that is how her story ended.
PS: It is NOT mitochondrial disease. Although she has more mitochondria than your average
Monday, May 04, 2009
To Do
I have a file open on my computer with a lovely little list on it, it looks something like this:
Saturday:
Haircut
Study chapters 18-20
Work on index cards for Pathology final
Sunday:
Study chapters 21-23
Work on assignment
Complete index cards for final
Shop for new shoes
Monday:
KayTar's neurology appointment
Assignment due
Study cards for final
Shop for new pants
Tuesday:
STUDY FOR PATHOLOGY EXAM
PREP SPEECH
Pack for DC
Pack for the kids
Write instruction sheets for my mom and Josh
Wednesday:
Take pathology exam
Fly to DC
Thursday:
Speaking engagement in DC
Fly home
Friday:
Study for pathology final
Review math concepts
Saturday:
Study for final
Review math concepts
Sunday:
Study for final
Review math concepts
Monday:
BubTar's well-check
Pathology final
Tuesday:
Turn in financial aid paperwork
Take math placement exam
Wednesday:
Register for summer/fall courses
Thursday:
Hospital volunteer orientation
The list had to be written because every time I would think of exam prep and speech prep my brain would start making this high pitched buzzing noise that made it impossible to concentrate. Lists are the cure for that high pitched buzzing sound (I think the Island on LOST finally got its hands on a cosmic notepad and was able to write down the infinite storylines it was attempting to follow and TA DA! No more buzzing!) and once it was all written down, it was instantly manageable again. Of course, there are a million little things not on the list, things that keep the house running and the children cared for that are more akin to breathing than they are Things to be Done.
This weekend I spent roughly eight hours each day reviewing pathology, which was interspersed between the oh-so-frequent cries of, "MooooooOOOOOoooooom!" and I thought, "Welcome to the next 8 years of your life, Kyla." Massive amounts of studying in the neediness trenches that is motherhood. Dad gets a lot of good press around here, as KayTar likes to say, "Daddy is my favorite! He's the prettiest!" but when push comes to shove, it is, of course, Mommy who is most needed. Daddy is better left for Plan B if Mommy denies a request, like if Mommy was to be unreasonable and tell a vomiting child that she CANNOT have some bacon RIGHT NOW, then Daddy is called in for an alternate verdict.
Earlier this week, Mommy went out for dinner and drinks with friends and within 5 minutes of being seated at the table, her cell phone rang and there was a hysterically sobbing four year old on the line, saying "I--(gasp)--WIWWY--(gag)--MISS--(gasp)--YOU!--(sobsobsob)" Mommy may not be the prettiest, but she is well-loved all the same. The phone call only made me feel only marginally guilty about going out for the evening, but exponentially more guilty about the decision to spend nearly every evening in the next year out of pocket. Guilt, the native language of motherhood. We'll all get through it fine, I know, but sometimes you can't sidestep the guilt entirely.
This list and the time frame it represents are a microcosm of my life, obviously; sick kids, lots of studying, a healthy helping of maternal guilt, doctor's appointments, exams, college, and various other time commitments. The good news is that by Sunday night, everything that should have been was neatly checked off and tucked away appropriately; children snug in their beds, notebooks and index cards filled with appropriate information and filed away for later review, assignments turned into professors, and I still had time to watch a bit of television with my husband. As I curled up under my covers last night, exhausted and content, I thought, "Yeah, we can do this."
Saturday:
Study chapters 18-20
Work on index cards for Pathology final
Sunday:
Work on assignment
Complete index cards for final
Shop for new shoes
Monday:
KayTar's neurology appointment
Study cards for final
Shop for new pants
Tuesday:
STUDY FOR PATHOLOGY EXAM
Pack for DC
Pack for the kids
Write instruction sheets for my mom and Josh
Wednesday:
Take pathology exam
Fly to DC
Thursday:
Speaking engagement in DC
Fly home
Friday:
Study for pathology final
Review math concepts
Saturday:
Study for final
Review math concepts
Sunday:
Study for final
Review math concepts
Monday:
BubTar's well-check
Pathology final
Tuesday:
Turn in financial aid paperwork
Take math placement exam
Wednesday:
Register for summer/fall courses
Thursday:
Hospital volunteer orientation
The list had to be written because every time I would think of exam prep and speech prep my brain would start making this high pitched buzzing noise that made it impossible to concentrate. Lists are the cure for that high pitched buzzing sound (I think the Island on LOST finally got its hands on a cosmic notepad and was able to write down the infinite storylines it was attempting to follow and TA DA! No more buzzing!) and once it was all written down, it was instantly manageable again. Of course, there are a million little things not on the list, things that keep the house running and the children cared for that are more akin to breathing than they are Things to be Done.
This weekend I spent roughly eight hours each day reviewing pathology, which was interspersed between the oh-so-frequent cries of, "MooooooOOOOOoooooom!" and I thought, "Welcome to the next 8 years of your life, Kyla." Massive amounts of studying in the neediness trenches that is motherhood. Dad gets a lot of good press around here, as KayTar likes to say, "Daddy is my favorite! He's the prettiest!" but when push comes to shove, it is, of course, Mommy who is most needed. Daddy is better left for Plan B if Mommy denies a request, like if Mommy was to be unreasonable and tell a vomiting child that she CANNOT have some bacon RIGHT NOW, then Daddy is called in for an alternate verdict.
Earlier this week, Mommy went out for dinner and drinks with friends and within 5 minutes of being seated at the table, her cell phone rang and there was a hysterically sobbing four year old on the line, saying "I--(gasp)--WIWWY--(gag)--MISS--(gasp)--YOU!--(sobsobsob)" Mommy may not be the prettiest, but she is well-loved all the same. The phone call only made me feel only marginally guilty about going out for the evening, but exponentially more guilty about the decision to spend nearly every evening in the next year out of pocket. Guilt, the native language of motherhood. We'll all get through it fine, I know, but sometimes you can't sidestep the guilt entirely.
This list and the time frame it represents are a microcosm of my life, obviously; sick kids, lots of studying, a healthy helping of maternal guilt, doctor's appointments, exams, college, and various other time commitments. The good news is that by Sunday night, everything that should have been was neatly checked off and tucked away appropriately; children snug in their beds, notebooks and index cards filled with appropriate information and filed away for later review, assignments turned into professors, and I still had time to watch a bit of television with my husband. As I curled up under my covers last night, exhausted and content, I thought, "Yeah, we can do this."
Saturday, May 02, 2009
This little sickie...
This little sickie has a fever,
This little sickie stayed home.
This little sickie did throw up,
This little sickie is dry.
And this little cried, "Germs! Germs! Germs!" all the way home.
This little sickie started running fever on Thursday morning. Early Thursday morning. Is-this-even-considered-morning Thursday morning. He's run a steady low grade since then. He missed two days of acheivement testing! We didn't take him in to the pediatrician because he didn't seem to be feeling too bad. Yesterday evening, his ears started bothering him. If he's still feverish on Monday, I'll take him in. He was supposed to go to my parent's house today to spend time with his cousins (and even go swimming!), but he'll be staying home instead. As you can imagine, he is less than thrilled. Poor little monkey.
This little sickie started vomiting out of the blue last night. It happened once, I cleaned her all up, put her in the sick seat and I stepped outside to talk to Josh about her meds (he was doing yard work). We were debating whether to give her Zofran, but didn't really come to a consensus. I came back inside and BubTar said, "Well, she just threw up EVERYWHERE." Zofran debate solved, instantly. And by the way, transdermal Zofran is a genius invention. If your kid can't keep anything down, are the liquid meds are going to make it through? Nope. Though, if you rub it on their skin, they can't yak it back up. Perfection! She continued to vomit last night, but with round-the-clock doses of Zofran (like say, setting an alarm for 3:30am so she doesn't miss a dose) it seems to be under control for now.
She's kept a small amount of water down this morning, though, we are playing a little Dry Diaper Roulette. As long as she holds down some clears this morning, it should work itself out. She also seems to be acquiring a bit of a germ phobia. I caught her swiping at her arms and shrieking "Get them off! Get them off!" the other day, which was a mildly disturbing sight, but it turns out she had touched something of her sick brother's and then thought his germs were attacking her. I said, "Well, let's just go wash your hands." But it didn't end the preoccupation. Every time stomach starts to hurt, she shouts, "Moooom! The germs won't leave me alone!" This morning she woke up and said, first thing, "The germs are still getting me! I need to wash with soap and water to get them out!" Poor kid.
This little sickie stayed home.
This little sickie did throw up,
This little sickie is dry.
And this little cried, "Germs! Germs! Germs!" all the way home.
This little sickie started running fever on Thursday morning. Early Thursday morning. Is-this-even-considered-morning Thursday morning. He's run a steady low grade since then. He missed two days of acheivement testing! We didn't take him in to the pediatrician because he didn't seem to be feeling too bad. Yesterday evening, his ears started bothering him. If he's still feverish on Monday, I'll take him in. He was supposed to go to my parent's house today to spend time with his cousins (and even go swimming!), but he'll be staying home instead. As you can imagine, he is less than thrilled. Poor little monkey.
This little sickie started vomiting out of the blue last night. It happened once, I cleaned her all up, put her in the sick seat and I stepped outside to talk to Josh about her meds (he was doing yard work). We were debating whether to give her Zofran, but didn't really come to a consensus. I came back inside and BubTar said, "Well, she just threw up EVERYWHERE." Zofran debate solved, instantly. And by the way, transdermal Zofran is a genius invention. If your kid can't keep anything down, are the liquid meds are going to make it through? Nope. Though, if you rub it on their skin, they can't yak it back up. Perfection! She continued to vomit last night, but with round-the-clock doses of Zofran (like say, setting an alarm for 3:30am so she doesn't miss a dose) it seems to be under control for now.
She's kept a small amount of water down this morning, though, we are playing a little Dry Diaper Roulette. As long as she holds down some clears this morning, it should work itself out. She also seems to be acquiring a bit of a germ phobia. I caught her swiping at her arms and shrieking "Get them off! Get them off!" the other day, which was a mildly disturbing sight, but it turns out she had touched something of her sick brother's and then thought his germs were attacking her. I said, "Well, let's just go wash your hands." But it didn't end the preoccupation. Every time stomach starts to hurt, she shouts, "Moooom! The germs won't leave me alone!" This morning she woke up and said, first thing, "The germs are still getting me! I need to wash with soap and water to get them out!" Poor kid.
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