Archive for January, 2011

Sad news again

A baby passed away last week from ARPKD an hour after she was born. She was given no hope for survival before being born. That frustrates me too. I also found out last week about a baby who died recently when she was five days old from ARPKD. She was on a ventilator and not urinating so the doctors told the parents to take her off of the ventilator and she passed away.

I am concerned with the lack of hope these doctors have and with their possible lack of information about this disease. I feel like it’s been more than 30% lately and that makes me really sad.


January 31, 2011 at 10:03 pm 2 comments

Monday Memories

So this awesome friend of mine sent me this awesome necklace. How perfect is that? We’ve called our boys the three peas in a pod for a long time. I love the necklace!!! And I am so lucky to have this friend in my life.

January 24, 2011 at 4:57 pm 1 comment


I am in the process of helping to write an article for a local parenting magazine about my life with ARPKD. A wonderful PR person who volunteers with the PKD Foundation is helping me write it and helped me decide that the main focus of the article should be about having HOPE with this disease. I am so happy with how the article is coming along. I will post it here once it is published.

The big thing I talked about in the article is allowing parents who are pregnant with a baby suspected of having ARPKD to have enough information to make their own informed decisions. It is so frustrating to me when doctors give a grim prognosis and tell the parents there is no hope for survival so do not even try to save the baby. If a parent is pregnant with an ARPKD baby and they decide to not use lifesaving measures then that is their decision and I respect that. What I don’t understand is how doctors don’t give them all of the information they might need to make that decision and especially when doctors have no HOPE. I know the statistics. I know 30% of babies die at birth from ARPKD. But I also know that doctors don’t really know what the outcome will be. Like I have said before if Gabe had not been put onto a ventilator he would have died. I don’t know what I would have done if the doctors told me there was no hope for survival. I don’t know what kind of decisions I would have made and honestly I’m glad I didn’t have to make any of those decisions. I wish no parent did. I wish all doctors gave ARPKD babies the hope they need.

I got an email today from yet another pregnant mom who is excepting an ARPKD baby and was given no hope and was told to hold the baby and love her until she dies. Again if those parents decide to not use lifesaving measures then I respect their decision, but not if the doctors don’t give them all of their options and some sort of hope. I emailed her but like I wrote in another post I worry I give too much hope. I actually said that in the email.

So right now I am talking to three pregnant moms and one whose son was born a few weeks ago and is in the NICU. I really hope these babies are as lucky as Gabe has been with ARPKD. And I hope their parents hang in there.

January 22, 2011 at 6:33 pm 1 comment

Monday Memories

I’m not sure if I’ve posted a picture of Matt’s brother, Michael, before. I’ve been thinking about him a lot lately and he came up in conversation a few times today so I thought I would share this picture. It’s of Michael after he got sick with cancer. It will be 16 years in April that he passed away. Today we talked about how Max is named for him. Matt was also talking about when he was little and said how when he and Michael were small they would go skiing with their dad. I like when Matt shares stories about Michael with the boys.

January 17, 2011 at 9:21 pm Leave a comment


That’s what the doctor said today… Gabe’s bladder is unstable and small. So there is a real reason why Gabe pees so much. Besides just having ARPKD and not concentrating his urine and being on a diuretic and making even more urine. There is an actual reason. Gabe has a small and unstable bladder. And guess what? According to the pediatric urologist we saw today it has nothing to do with ARPKD. Is Gabe lucky or what. It’s not a complication of the ARPKD but just another anomaly his body has produced. Yea, yea, it’s s fairly simple fix. Add one pill a day for a few months and see if this works. Add one small white pill to the five he already takes every day. Not to mention the growth hormone shot he will begin soon. It is small compared to what it could be. But, come on… does this boy really need another issue. Hopefully it will correct the wetting problem and that will be great. But it’s just another thing to think about and another thing to follow up with. The only funny thing is that the pediatric urologist’s name is Dix. How funny is that?????

January 13, 2011 at 9:46 pm Leave a comment

The System

I had an IEP meeting for Gabe today. When we went to NIH last May the psychologist said he had a fine motor weakness. He did receive physical therapy as a baby and all of my boys are low tone. They take after me! I knew he was weak but blew it off. In October his whole nursery school class received an informal evaluation from an OT who said he needed it. So I referred him to the district. He had his evaluations in December. I was not thrilled with the OT eval but didn’t say anything because I really thought he would qualify. Plus his teacher and the psychologist agreed on how weak he is. Well at the meeting today he did not qualify for services because he is only 1.2 standard deviations below the norm and not 2.0 below. Ugh. I was so annoyed. It got pretty heated and the chairperson is not happy with me. I said I wanted to table the meeting, I was not in agreement, and wanted a re evaluation. I asked what my due process rights are as a parent and he said none because I didn’t sign anything, which I actually think is not correct.

What frustrates me is the system. There are always gray areas and this person just didn’t see it that way. Gabe has so much going on in his life why add another stress when he gets to kindergarten. Why not nip it in the bud now???  I wanted to say to this person that Gabe has high blood pressure, is anemic, is about to start growth hormones, pees in his pants a dozen times a day…. all related to his ARPKD and all out of my control. This fine motor weakness can be in all our control by just giving him OT. I did try to talk about the whole medical aspect but he kept referring back to the fact that it is not affecting him educationally/cognitively since he scored fine on those tests. So even though he has a fine motor weakness it isn’t adversely impacting him educationally.

I’m going to fight it but just need to figure out how! The system sucks. I totally lost it after the meeting because as usual it’s all of the little things together that add up and push me over the edge.

January 11, 2011 at 6:53 pm Leave a comment


Right now I am in contact with six new people. One lost a baby last week to ADPKD. One had a baby this week with ARPKD. He is stable but they are thinking they might have to remove his kidneys next week because he hasn’t started peeing yet. Another one just found out her two sons have ARPKD. Two other women are pregnant with babies with ARPKD. And another woman is married to a man with ADPKD and her dad died from ADPKD.

Sometimes when it rains it pours with this disease. I hope I am of some help to these people. Matt worries that I get so emotionally involved but I need to do this for so many reasons. I need to give these people some semblance of hope if I can.  And it makes me feel like I am doing something with this disease. I just really hope I’m not giving out false hope.

January 6, 2011 at 10:21 pm 2 comments

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