Friday, March 30, 2012

End of March

Stephen and I are "vacationing" right now at Mimi and Poppy's house in York and enjoying some time away from our normal every day routine while Bill is in Florida doing some work and golf.  I don't have a whole lot of new information to share yet regarding Stephen's transplant except I can share that we've had three more individuals complete the initial antigen (cheek swab) test to see if they are a match to be a living donor for Stephen.  And we're just sitting tight for now waiting to see how things fall in place.  We do go up to Philadelphia next week for a visit at CHOP that we're excited about.  It will be our first appointment with the combined kidney/liver clinic; the only one of its kind in the country.  It's really geared toward kids with ARPKD/CHF.  The ARPKD is the disease that affects Stephen's kidneys and CHF (congenital hepatic fibrosis) is the disease that affects Stephen's liver.  We did some special lab work last week pertaining to Stephen's liver function that the liver doctor at CHOP requested a while back, so we'll hopefully go over that and his most recent kidney lab work as well.

Right now Stephen is most interested in standing and learning how to walk.  He wants to be down with his feet on the ground at all times! He hasn't yet taken any steps on his own, but he's getting there.  But just a few minutes ago I glanced down at the monitor and noticed Stephen wasn't in the screen.  I went upstairs to check on him since he's supposed to be napping and clearly wasn't and there he was at the far other end of his crib on his tummy!  This is a definite first for him!  He hates being on his tummy and has still not been able to crawl.  So obviously he had rolled himself over and crawled backward down the crib.  Which is very exciting for me!!!  His gross motor skills are where he is most developmentally delayed, but slowly but surely he'll get there.  Karen, his physical therapist would be so proud!

I was so excited when I saw him on his tummy, I grabbed my camera and snapped a picture

Not much else to report right now.  Stephen's moved from eating baby food puffs and cheese curls to saltines and goldfish.  It was the weirdest thing.  He went from eating an entire can of puffs to none! But decided that no-salt saltines were his thing.  They honestly taste like cardboard!  And with no water or juice...yuck!  But it's what he likes right now, so he can have all he wants!  Oh and his verbal communication is starting to pick up as well.  His favorite words right now are "da da," "bye bye," and "ball."  The "B" sound is definitely his favorite.  But he's also starting to pick up some of the "P" sounds like "paw "paw."  And every once in a while he'll say "momma."  But Daddy is definitely the favorite!!!!

Here are a few more recent pics of Stephen from the past two weeks

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!!

Sunday, March 4, 2012

Heading Home

Bill and I are sitting in the Orlando airport right now waiting for our flight back to DC. We had a really nice trip and reality is setting back in that we have to actually return to reality today. In a perfect world, we would scoop Stephen up and head somewhere warm and tropical and continue our vacation. But...we need to return to work and everyday life. All kidding aside, the trip was fun and relaxing and as far as we know, everything back at the ol' homestead went great! Every call and text indicated that the Grandma's were having a great time babysitting and all the medical stuff went off without a hitch. They went to the park, out to dinner, and took him to the doctor's office to get his blood pressure taken (our machine broke right before we left) amongst other things, so I think our trip went really great!!

Right before we left for Orlando I spoke with the transplant coordinator at CHOP about how things were going with Stephen's testing and our search for a donor. As far as Stephen goes, we had pretty good news. He has some fairly common antigens, so that should hopefully make it easier finding a good match (great news), but his blood work showed that he hadn't responded to all of his vaccinations. Not all of his blood work had come back when we talked, so once they come back, the team would consult with an infectious disease doctor and determine if he could just get the vaccines again, or what the result would be. I think the vaccines in question were his MMR (measles, mumps and rubella). So I'm waiting on more info about all of that.

We also decided that we were going to move forward and start the donor matching/testing process for the 6 people that have contacted Jo Ann about being a donor for Stephen. We (and I think the doctors too) have been amazed at the outpouring of support and interest in donor matching for Stephen. We didn't want to go too crazy right off the bat with testing, so we figured we would start the testing with those individuals, and see if any of them are a suitable match, and then go from there. We didn't want to go crazy and get in trouble with the insurance company by testing an unusually large number of people. It's dumb we have to think about that, but it's the reality of the health insurance world.

So far as best I know, one person's HLA testing came back and they weren't a match for Stephen. It came down to antigen matching, not blood type. It was a bit of a reality check for me because I hadn't really thought much about the fact that some, if not all of the people that want to be tested, could end up not being a match. I was just so excited at the number of people that wanted to be tested, that I just hadn't thought about that at all! But I'm hopeful that luck will be on our side with this and someone will end up being a match. And in the event that none of the 6 are, we'll keep asking and using the Internet and social media and word of mouth to keep up the search for a donor. I'm going to work hard at keeping the blog updated so that people know where we stand in the donor process and continue to keep Stephen's story out there and maybe, just maybe, someone will get a hold of our story that could really send it into the stratosphere and raise even more awareness for kidney disease and organ donation! Did you know that March is actually National Kidney Month!?!? :)