Archive for May, 2009

yet another jinx

I know I’ve posted this before about how we feel like we are jinxed. Mostly with stupid stuff but also with the boys’ health, Nate having 4 tick bites in the last 12 months (and the fear of lyme disease), our airline fiascos, and many other little things. So today we removed our oil tank. In the east a lot of homes are heated by oil, but we wanted to switch over to gas. Today we removed our tank and guess what we have a huge oil spill underneath the tank. In other words our tank has had a hole in it for years and oil has been slowly leaking out and contaminating the ground. Most likely this has been going on since before we even moved in to this house in November of 2002.  The company we used to take out the tank (which was 1500 dollars to just remove it) said the clean up costs could be anywhere from $5000 to $25,000 and possibly more. We have oil tank insurance but there are some strange loop holes within the policy, one of them stating if you voluntarily take out your oil tank and switch away from oil and do not continue to have oil then the policy is void. Hmmm…. this is frustrating because if we didn’t switch or take the tank out we would not have known there was a leak. We had the ground tested when we moved in but they test from the top and the oil leak is underneath the tank. Our homeowner’s insurance will pay 100% of the clean up costs if the city water is affected.  The environmental conservation agency says we have to clean up the oil spill regardless if the water is affected. Obviously for the environment it is worse if the water is affected but if the water is not affected than we have to pay for the clean up costs so I am hoping that the water is affected. Is that wrong?

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May 29, 2009 at 5:00 pm Leave a comment

Sad

I learned about another baby who died in April from ARPKD. The parents were given a death sentence the minute the baby was diagnosed prenatally and the doctors did not even try to save him.  When I emailed the mom and told her I had two boys with ARPKD she emailed me back and said she didn’t mean to ask a silly question but how could I have 2 living boys with ARPKD when it was such an aggressive disease neonatally. She also has two older children who have not been tested and the doctors told her there was no need to test them and there was absolutely no chance of them having it and a 66% chance of them being carriers, both misinformation.  The lack of information in 2009 by doctors is astounding to me.  There is another mom who I am in contact with who lost a baby recently as well who did not have amniotic fluid. I told her about someone I know who did amniotic infusions who now has a six year with ARPKD.  This woman’s doctors said amniotic infusions cannot help a child with ARPKD. It’s frustrating to me that they wouldn’t at least try them.  If these doctors think they cannot help why would it hurt to just try it.  I know I’m not a doctor and don’t know everything there is to know about ARPKD but I just don’t understand how doctors don’t even try and just let these babies die. It brings back so many memories of when Gabe was born and what we would have done if the doctors have given us no choice. I say this over and over but if Gabe had not been put on a ventilator then he would have died. I think I am still so angry about the whole process of how doctors treat these mothers and don’t even try to get them all of the information they need to make the right decision.

May 27, 2009 at 8:27 pm Leave a comment

Mother’s Day

My whole life I wanted to be a mom. And now I am!! To three beautiful boys.  It means a lot to me to be a mother but especially to feel that I am a good one.  I definitely think I was a better mom before Gabe was diagnosed with ARPKD and I often wonder how I would be different if I had healthy kids. I think many people, me included before the diagnosis, take our healthy kids for granted. But I also think the added stress of the disease has made it harder for me to be calm and relaxed with the boys like I was before.  But I do feel very lucky to have them. And I could not imagine my life without them.

This Mother’s Day was twofold for me. One was being honored that I am a mother and the other was remembering all of the moms who have lost babies and children, especially those moms who lost babies to ARPKD.

May 11, 2009 at 10:00 pm Leave a comment

Sad

Another baby died yesterday because of ARPKD. There hadn’t been much hope because the mom didn’t have amniotic fluid since 20 weeks but I always have hope for a miracle. It just makes me so sad.  With so many advances in technology and all we know so many babies are still dying from ARPKD. Her doctors wouldn’t even try amniotic infusions.

May 9, 2009 at 9:53 pm Leave a comment

Kidney Donation

The one good thing about needing a new kidney is you do not have to wait for a cadaver.  We all have 2 kidneys and can actually do just fine with one. The problem is there are not too many altruistic people out there willing to donate a kidney just to donate a kidney.  Usually it’s when a family member needs one.  I’m not sure I ever would have thought of it before all this, but a part of me thinks I probably would have. I had already signed my license so knew I would do it if I G-d forbid passed away at a young age.

The reason I am writing this is there is this little boy with ARPKD who desperately needs a new kidney. He had an older brother who died at birth from ARPKD and he has it as well. He has already had one transplant, which failed and is now on dialysis again.  Here is some info: We need a kidney for B. If you are interested in donating. please call our transplant coordinator Angela Barber at 412-647-5489. First step, you must have O Blood. All expenses will be covered. I took out his name b/c I don’t feel comfortable posting it. But if you happen to come to my website and see this and know someone interested then you would have the right number to call.

I really hope we never get to that point where we have to beg for a kidney for Max or Gabe. I am hopeful I will qualify to donate to Gabe when the time comes and I am hopeful we will have an altruistic friend or family member ready and willing to step up to the plate for Max. Unfortunately Matt’s blood type makes him incompatible with either of them.  Matt has AB-, Max has B+, and Gabe and I have A+ (of course!!).  But I am also hopeful this won’t be for many years and technology will have advanced enough that we might not have to worry about blood compatibility, although that is way too positive for my thinking!

May 9, 2009 at 3:29 pm Leave a comment

Grant Proposal

The 7th grade class at my Temple does a mitzvah project every year. They pick a topic (this year is disease in children) and then they have various organizations present grant proposals. Then they vote and pick one or two organizations to give a grant to. Then they do fundraising (not sure how this works). And then that money goes to the organization they pick. So, today I presented my grant proposal. What a formal process. The funny thing is I had no idea how formal it would be. I actually thought I would just send a quick email saying I had 2 kids with ARPKD and then if they picked me then I would just send the money in to the Foundation and it could be tacked on to a research project or something like that. But they actually needed a formal proposal! And thank goodness for the Foundation and the ARPKD advocate there. I don’t know if she would want her name here or not. But I emailed her last week on Monday, talked to her on the phone on Tuesday, and Wednesday she sent me a great grant proposal to do an ARPKD webinar. And then today I presented it to the seventh grade class of about 30 twelve year olds!  I was nervous and talked way too fast but I think I did okay. At least I hope I did okay!  I’m pretty proud of myself either way. And then tomorrow someone is calling me to talk about doing a video on PKD and incorporating ARPKD into it. How exciting! And my awesome friend who has 2 kids with ARPKD emailed me tonight and told me it’s okay to give these women I talk to hope and that I need to give them hope and I need to continue advocating for ARPKD. It made me feel much better. Today was a good ARPKD day.  It sucks we have ARPKD in our lives but since we do today was a good day.

May 3, 2009 at 11:06 pm Leave a comment


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