Dear Mrs. Obama

A year ago the head of the Brendan B McGinnis cCMV foundation asked parents to write letters to Mrs. Obama to raise awareness of CMV. The letters were compiled but not delivered until today.  Today the letters from ~100 families were hand delivered to President Obama by Tracy McGinnis where she met the President and gave him an overview of CMV with her sons - including Brendan who is severely affected by cCMV.  President Obama said he will read each letter and I'm so proud my letter and a photo of Emma was included in the information Tracy gave our President.  

In case you are wondering what I said, here is my letter with a couple of items edited out for the web because some information is still best left off a public blog ;-)

Dear Mrs. Obama,

Today I am writing to tell you about how a seemingly insignificant virus has changed my life.  Cytomegalovirus, or CMV, is a very common virus and many times the symptoms are similar to the common cold.  However, when a woman who is pregnant gets effected by CMV it can cause a variety of problems with the unborn child.  I had never heard of CMV, was not counseled on it during my prenatal visits (where I was advised about toxoplasmosis and other obscure viruses), and did not even know I had contracted CMV until my baby was 3 months old. 

Emma had an uneventful birth.  She was a planned pregnancy and I attended all my prenatal visits.  I did not drink, smoke or do anything that could harm my baby.  I had gone to college, worked several years, completed a graduate school program, met and married the man of my dreams, had my first child and was very excited about my second baby.  I was so excited to find out she would be a girl - I would have two girls - sisters!  I love the bond that sisters have and was so happy to finally meet my little baby Emma.  So when we found out she was deaf when she was 6 weeks old we thought it must be due to genetics.  Upon going through the process of determining the cause of her hearing loss we found out the cause was from CMV.  We found it out on Dec. 31, 2007 and promptly went home and googled CMV and baby and I can tell you it was a horrible way to ring in the new year.  There were no positive messages about the impacts of CMV on babies and many references to death and severe disabilities.  I sobbed for hours and kept looking at my baby who I thought was perfect in every way and thought it must all be a big mistake, that the virus CMV was not the cause of her hearing loss.

Fast forward to today.  Emma is now 4 years old.  She has a loving supportive family.  She also is deaf and has cerebral palsy that effects every part of her body.  She cannot sit independently, hold her head up for prolonged periods of time, crawl, walk, talk, feed herself, give herself her own bottle.  She can smile, giggle heartily, and melt your heart.  She is a smart little girl who knows her colors, animals and many other things.  We are working hard to give her a communication system so that she can tell us more of what she knows! 

I don't know what the future holds, but I sure do know that she is one loved little girl.  Her father, her sister and I include her in all our activities.  But, her direct care needs are high.  I no longer work and it is very hard financially.  I worry constantly about all the political discussions about health care and cutting back on Medicaid funding.  We pay about $X/month for health insurance and it does not cover therapy for chronic conditions (cerebral palsy is, not surprisingly, considered a chronic condition) and it excludes all hearing coverage including cochlear implants.  Emma has bilateral implants that she uses to hear and they require maintenance and auditory therapy.  Emma is making a lot of progress with physical movement, but it is a constant battle with insurance to obtain the equipment she needs to lead a better quality of life.  While I love my daughter with all my heart, I would love to prevent other families from having to see the effects of CMV on their child and from the sleepless nights worrying about their well being and how to pay for their care.

I imagine that when you were going through prenatal visits you had not heard of CMV and it is by the grace of God that you did not find out about it when your baby was 3 months old and not meeting her milestones.  I know we can do a better job of educating women about CMV and how they can prevent the leading cause of non-genetic hearing loss and cerebral palsy.  More children are affected by CMV than spina bifida, fetal alcohol syndrome, or downs syndrome but yet people are still relatively unaware of the effect CMV can cause on their unborn baby.

Please help us spread awareness of CMV.  Please continue to fight to keep Medicaid available for our disabled children. 

Thank you for your time and consideration.  I'm attaching a photo of Emma for you.  She is my hero.  If you are ever in the Philadelphia area I would love for you to meet her.  I know she will forever touch your heart.  You can reach me at:   My email is

Best Regards,

Kristina , Mom to two beautiful girls, one severely impacted by CMV

Proud Supporter of Obama 2012

It's no secret that I'm an active Obama 2012 supporter.  I voted for him in 2008 and think he had a hard road and overall took our country in the right direction.  I specifically am pleased with some of the reforms he made - such as the financial reforms, the changes in health care (ok...it's not perfect but a good starting point!), and his fight for equal pay for women.  There are some things I'm not so pleased with, too, but I think that would be the case regardless of our president since I can't be pleased all the time.  Just ask my husband ;-)  Just Joking!

Unfortunately we didn't get to see approved legislation on equal pay for women but I am still hopeful it will come.  I am worried, too, about what a Republican president would mean for women's rights here in the USA.  Case in point Todd Akin and Paul Ryan's stance on rape and conception.  How can this play out in real life?  Here is an eye-opening well written article on CNN from a survior's point of view.    

Now, for some fun with the political process I leave you with this video.  Mom and Dad - you'll get a real kick out of it so be sure to watch!

Less than exciting post on insurance

Since this post is on a dreadfully boring topic I figured it was best to lead with a cute photo.  Emma sure does love acting like a beach bum!  With all the hard work she puts in all year she sure does deserve her fun in the sun.

Vacation is over and it's back to reality.  I've been spending a lot of time this week following up on medical stuff - trying to find out when we will get Emma's talker and if/when I'll be able to get an aide at home a few hours a week to help with Emma so I can work at the position I accepted.

Following up on insurance, therapy and school stuff for Emma is a pretty normal daily activity for me.  It's not a particular task that I enjoy but I learned early on that if you don't call and follow-up on items constantly then someone usually drops the ball.  You would think that something is getting processed only to find out a couple of months later that, no, they have no record of {xyz}.  During my calls I found out the insurance company has no record of a request for a home aide so I've added calling the pediatrician to find out the status of the letter of medical necessity to my list of calls.  I also found out Prentke Romich (PRC) - the company that makes the talker we are ordering - did not receive the approval letter {that we received over a week ago} from Emma's insurance company so I'll get them a copy of it.  And then I'll call them again to make sure they received the fax of our approval letter and find out where they are with sending out for approval from her secondary insurance since her secondary told me they have no record of a talker request.  It's sort of like a never ending do loop with insurance.  I'm so incredibly thankful we have insurance, though, that I'll take the extra work required to push things through.  I just can't help but thinking that they sure do create a lot of extra work!

Emma has been moving around a bit more.  Rolling here and there, working on crawling and generally being active and making it hard to keep her Cochlear Implants on her head!  Hooray for that!  The downside is that she is going through some excess parts just as the warranty on the CIs is getting close to expiration.  I'm keeping my fingers crossed she gets most of it out of her system before December when the warranty is up because new parts will have to go through insurance (ugh!) after the warranty period.  This week she (we?) managed to lose her ear hook and ear mold during a walk.  I'm so thankful that the CI stayed on her head, though, as that is the big dollar item!  We stopped at her hospital today to see if they could take some ear impressions for new ear molds and they fit her in.  I really love her hospital!  They always treat us like VIPs and fit Emma in even when we have no appointment and they are super busy.  We are so thankful to work with such a flexible team that really goes above and beyond to ensure Emma's needs are met.

In other shocking news, I made a couple of appointments for myself this week!  I need to follow-up on my fractured ankle and have a long overdue eye exam so I can get new contacts.  My eyes will be thrilled when I come up with a brand new pair of contact lenses after wearing these old ones way longer than suggested.

Update!

{Not so} Breaking News:  Emma's insurance situation is straightened out.

• Here's what happened:  Each month a computer system is run in all the states to ensure people aren't double-dipping on Medicaid services.  Something happened that Emma came up positive in our old state and so our new state didn't want to provide duplicate services and ended Emma's coverage.  That is what happened in April and again in July.  I didn't know the cause in April so couldn't get it rectified so it happened again in July.  I now know the cause and contacted our old state to have them update their records with our new address.  The only way I found out about this was getting my local Representative's office involved.  They helped tremendously - and I'm telling everyone I know about it so they can use this information when they vote.  Fingers crossed this doesn't happen again next quarter!!!!

I also started on the contract job I mentioned.  It feels good to do a bit of work again.  I didn't realize how much Microsoft Office programs would be updated over the last 3 years so it took me a bit of time to re-familiarize myself with the programs but I'm happy to report that it all came back to me pretty quickly.  Sort of like riding a bike........strange how that happens!

We continue to make progress on Emma's next IEP.  The most actionable was that the girls and I toured the reverse mainstream program.  It was great to see it in action to really help think through the best placement for Emma next year.  I might have driven Chris a bit crazy talking through all the school placement options, but I think we finally have an idea on what is the best placement for her.  I'll update it all after her next IEP meeting that is scheduled for the end of the month.

Meanwhile, we've been soaking up lots of summer fun!  Here are a few photos to show what else we've been up to.

Busy

It feels like all I'm hearing about lately is back-to-school stuff.  But I don't feel a bit like we are ready for back-to-school and that's fine since the girls won't start the Fall semester for at least another 4 weeks.  That leaves us time to:

• Get Emma's secondary health insurance (Medicaid) reinstated.  Apparently our state thinks she moved out of the state and kicked her off.  We didn't move and have no plans to leave the state now or in the future, so of course we filed an appeal along with paperwork proving we still live here.  Nothing has happened since I filed so that warrants more trips to the public assistance office, calls to advocacy groups and me growing more gray hairs.  Fingers crossed this is cleared up.....again.  Yes, again.  They did the same thing in April 2012 - 3 months ago - but they responded quickly to my appeal then.  Why do they keep thinking we are moving?  
• Finish up Emma's re-evaluation for her IEP.  I wanted her to stay in the developmental delay classroom since she really started to make progress on her goals and have a major focus on communicating with the ECO2 communication device (WHY oh WHY does her Medicaid have to pick now to kick her off?  Right when we are in the process of trying to give her a voice via the ECO2 with ECOpoint computer???!!!!!).  The team was in support of this.  I also want to supplement that with with a wonderful typical preschool program I found in our neighborhood a few days a week.  The school is a great fit except it seems like I can't garner support for a one-on-one aide for the typical preschool placement - and Emma needs a 1:1 in order to participate in the curriculum.  Apparently the school is by law required to only support one placement.  We are working this all out and will need to agree to a placement soon if Emma is to start school on time.  We also need to revise her IEP since it expires the first week in September.  I see even more gray hairs in my future!  Stay tuned....
• Take a vacation.  We didn't take one yet outside of a day trip here and a night away there.  We have something planned for August and are looking forward to a bit of time away.  Some sun, fun on the beach, a few drinks and maybe I can fend off all the gray hair trying to sprout from my head!
• Make a little money.  I'm thrilled that I'm now working part-time for a former co-worker at a really cool company!  The work should take a few months to complete so I'm not getting back into working full-time or even for an extended period of time.  This will be just enough to get my feet wet in corporate America again while still managing to keep the girls out of day care - something very important to both me and Chris since feel Emma is making the best progress under our care.  And I'll be honest and say that it will be helpful to have the extra money.  The nice thing is that if the company likes my work and I enjoy working for them there could be the opportunity to extend the project to other areas.  For now I'm taking it one thing at a time.....

These girls are worth all the advocacy, sleepless nights and gray hairs.  Don't you agree?!

Movies and health care musings

If there is a {fluffy} romantic comedy or feel good movie you could probably bet that I'm interested in watching it.  The last few years I've found guilty pleasure in escaping the everyday realities of life for some good fluff.  Besides the brief, but emotional, investment in Band of Brothers we watched over Christmas, I haven't been interested in watching much else besides the fluff.

This wasn't always the case.  I took a documentary film class in college - Senior year elective that I thought would be a cake walk but wasn't - and kind of fell hard for good and even mediocre documentaries.  The past few years, though, I've been snubbing documentaries and even avoided attending positively reviewed shows at our local film festivals.  But this couldn't last forever and our Netflix cue seems chock full of documentaries (that I must have loaded one day when Chris let me loose to update our cue) based on what they've been sending us lately.  King Corn, Enron, all things Michael Moore - Chris keeps talking about reviewing the cue to throw in some action and adventure movies because he has been avoiding watching the Michael Moore disks that show up.

Last week I watched Sicko.  If you can overlook some of the corny narration it is a very interesting look at our health care system.  Is it one sided?  Probably.  Is it thought provoking?  Definitely.

I was at Easter mass and had a flashback to a portion of Sicko and a portion of What Would You Do? (the show where they put actors in situations to see how real bystanders react).  I just kept thinking to myself that Jesus died on the cross for us and what his request to us was to love one another.  Seems like a fair trade for the promise of eternal life, right?  I wondered how good we are doing at the love one another request when in the USA, one of the wealthiest countries in the world, we continuously argue over covering basic medical care for our people and feeding our poor.  Really?  What the heck is our problem?

I'm not going to fire myself up this late at night, but suffice it to say that I've acquired gray hair and I've learned a LOT over the last 3 years about health coverage, health insurance, and how coverage for our disabled children varies greatly based on both your insurance plan and the state where you live.  I can be a bit dramatic, but I mentioned to Chris the other day that I think our country has a "caste" system when it comes to health insurance.

And I began to feel a stronger call to action on keeping the budget intact for the disabled children.

And I think after reading this post Chris will feel a stronger call to action to review our Netflix cue.

Dear Mr. President

I've been thinking about health care a lot lately and decided to write a letter to my representatives and the President. I plan to send the letters this week. Here is what I wrote - what do you think? Did I miss anything? Let me know.

Dear President Obama:

I am asking you to keep fighting for true health care reform because it matters more to people that they know. Like most Americans, I didn't realize that our existing health care system was letting down so many people. I did all the “right” things – went to college, worked my way up the ranks in a big company, completed my MBA, saved, bought a house, fell in love and married, and had children. We subscribed to the company health plan and were relatively happy with the coverage.

Then our world was turned upside down when our youngest child was diagnosed with profound hearing loss and cerebral palsy. I learned first-hand how great health insurance is if you are healthy, employed at a large corporation with reasonable health insurance rates and good coverage and how variable and challenging it is for people working at small businesses with hefty insurance rates and minimal coverage.

Recently, I lost my job and we had to change insurance. We worried about pre-existing conditions. We could not use the Cobra subsidy since my husband is able to obtain health insurance at the small business where he works even though the cost for his insurance is double what it would have been with the Cobra subsidy. We now pay 3x more for health coverage (vs. the large company) and have very little covered. The new policy has many exclusions, including cochlear implants and therapy for chronic conditions. As our family faces a lifetime of health costs we are learning more about the health care system than we ever imagined.

Although they might not know it, many Americans are one diagnosis/accident away from realizing how important it is for them, personally, to have the health care system changed. Specifically, we need to:

• Remove the pre-existing condition clause

• Eliminate lifetime maximums

• Strengthen the Medicaid programs to provide accessible, high-quality health care services to our children with disabilities

• Incorporate long term services and supports by including the CLASS Act and the Community Choice Act

Thank you for your continued fight to pass a true health care reform.

Regards,

Kristina