Friday, March 9, 2012

Ready for the Weekend

Seriously, thank god it's Friday!!!  I wrote a whole post yesterday with pictures and all, but for some strange reason, it won't upload and post.  It had some cool facts about kidneys and some cute pictures of Stephen and his new teeth!  Yesterday was World Kidney, so I really wanted to spread the word about kidney disease and organ donation, but I guess the internets had a different plan.  I'll work on getting it posted later so at least you can still see the pictures.

This week has been one crazy week!  Who wants to go back to Florida???  Me me me!! But with Stephen and Bill of course.  Monday started off good with a trip to the grocery store....except my car wouldn't start.  Needed a new battery.  Fail #1.  Blood pressure machine still isn't fixed, so I'm having to drive Stephen 25 minutes across the Beltway everyday to nephrology to have them take it.  Fail #2.  Getting an attitude from a certain person about having to submit paperwork for Stephen to get his prescription drugs covered by his new Medicare Part D plan.  Major fail #3.  Being told my Medicare that his new plan isn't working in conjunction with Bill's employer plan; need to call Wells Fargo HR, but they won't talk to me without Bill on the line.  Super major fail #4.  Having Wells Fargo HR person tell us we can't have both Medicare and primary health insurance for Stephen and that we have to choose between one or the other.  This would be really horrible for us since our primary insurance coverage isn't that great by itself and Medicare definitely isn't great by itself either.  Our pediatrician doesn't even take Medicare and losing her would be devastating to me.  This results in me crying on the phone to the HR person who doesn't give a crap.  Again, super major fail #5.  I then spend hours calling all over the place talking to every single person I could think of about this and then drudge up the Wells Fargo Benefits Plan  from the depths of the internet and find that the HR person was wrong.  Score one for me!!!  We still haven't gotten a phone call back from them, but when we do, I think I'll be having some words with them.  I do however, need to write a letter to Corporate Benefits because the prescription drug plan they chose, won't cover some of Stephen's prescriptions because they are compounds.  Absolutely ridiculous!  These are not obscure drugs, they're specially formulated for a baby; that's all.  Then it continued today at CVS when Medicate denied a prescription.  It's never ending!!  I'll be so thankful after his transplant when these drugs will go away!!  But despite all of this craziness, Stephen had a really great week and we had fun yesterday afternoon enjoying the beautiful weather at the park.  And on Wednesday we took a trip to the library where my little aristocrat sat at the table and read a wonderful picture book.

The most recent information I have in terms of transplant is unfortunately not so great.  We're now 0 for 2 with donor matching, but still have a few more to go hopefully.  It takes a week for the results of the HLA testing to come back, so hopefully we'll get some better news next week.  The other piece of information I received was regarding Stephen's vaccinations.  It turns out that Stephen has not responded to his MMR and chicken pox vaccine.  He didn't completely respond to his hepatitis vaccine either, but the hepatitis vaccine is not a live vaccine, so he could get another dose after transplant.  Stephen must receive all of his live vaccines before transplant.  I've been told that typically the early a child starts dialysis, the less likely they are to respond to the vaccines.  I don't know why that is, but I guess it makes sense.  And Stephen basically started dialysis as early as humanly possible, so I guess they sort of expected this outcome.  He can get another dose of the MMR and chicken pox vaccine before transplant, but if he doesn't respond to that round, then he can't get them again.  Basically, he'd be unvaccinated for those diseases.  Which scares the hell out of me!!  We'll have to be very diligent about telling day care providers, teachers, and nurses about this and making sure they tell us right away if Stephen's been exposed to other children with chicken pox.  I know most (probably 99% in this area) kids get their vaccines, but it just scares me so much because I know there are people out there that don't vaccinate their kids for fear of vaccines.  I just hope and pray those kids are not in school with Stephen.  I know he'll be immunosupressed anyway and susceptible to so many things, but I just never ever imagined that my child could potentially be unvaccinated.  And Bill and I will also have to be really diligent about getting our vaccinations too!  I just hate it when they tell me, "you'll just have to be very careful."  It's like, what does that mean?  I can't keep my kid in a bubble! He's got to be a normal kid and do normal kid things like go to school and ride the school bus.  I don't want Stephen to grow up too fast, but I'll be so excited when he can finally walk and run around and I can take him to the park and actually let him play with the other kids.  I think he'll be the happiest little boy when he can finally get up and really play!! 

And who knows if and when I"ll get yesterday's post up, so here are the pics of Stephen's new teeth.  He's got 4 in the front (top and bottom) and he's getting two more on the top in the back. 

He's handled getting his teeth little a champ!!


  1. Hi Stephen,
    Love your new "pearly whites"!! That smile of yours is even brighter now!! We had dinner with Mimi and Poppy last evening and heard all about your latest conquests. Glad to hear that you are doing well. We are sure that your first steps are just around the corner--Can't wait...
    Love and hugs to all...
    Aunt LuAnn and Uncle Dick

  2. Hang in there sweet friend! We are all still praying for you guys every day. I can't begin to get my head around how frustrated you must be. Please call if you ever need to talk, or yell at someone who will love you anyway. ;)

    What a gorgeous little smile! Hugs from the DiPiers!


  3. Sending a big hug and kiss to Stephen . I love the new pictures ! Take care, Carrie Pasquarello

  4. daddy's little hero!

  5. I would really appreciate if you could contact me... id love to see if I was a match... I havr a little one and would appreciate if I was in the situation someone else would do the same. my # is 7652592778.


  6. You guys are always in my prayers! Love the new pics of Stephen's chompers. What a cutie!