Archive for April, 2009

False Hope

Matt thinks when I talk to these moms who are pregnant with babies with ARPKD that I am giving them false hope. He thinks if they have no amniotic fluid and the doctors have no hope then I shouldn’t be giving them any hope. My feelings are so many doctors out there do not have enough information about ARPKD and immediately give the worst case scenario. I just want these moms to know there are other possibilities and other options.  I know of a few cases of amniotic infusions that have helped but I also know of so many doctors who refuse to even try this and say it doesn’t work. I also know of a case where the parents were given no hope and told numerous times to take the baby off of a ventilator and he is now 7 years old. There is another family I spoke to last year that was given no hope and had no amniotic fluid and the baby came out breathing on her own. I just don’t understand how the doctors know for sure the baby will not survive. I often think if the doctor had told us that Gabe would not survive and to not even try to save him or to take him off of the ventilator, what would our choice have been. And if he did not go on the ventilator he would have died.  The thing I always say is how different ARPKD is in every child.  A doctor cannot possibly predict what the outcome will be.  There is this one particular mutation of ARPKD that is almost always fatal except every once in a while it’s not fatal.  So how do these doctors really know.  And what is so wrong with me giving me these families as much information as I can and some hope to grasp on to. I am also very realistic with them and tell them about having a photographer present in case the baby doesn’t make it and to have an autopsy done and DNA testing for future pregnancies.  Matt and I deal with things in such different ways and it is frustrating that he gets angry with me for giving these moms hope or as he says false hope.  He just doesn’t understand my need to talk to these moms and to try to help them as much as I can. It is one of the only ways I feel like I am doing something important with this diagnosis.

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April 30, 2009 at 9:53 pm Leave a comment

Happy 9th Birthday, Max

Dear Max,

I cannot believe my little peanut is nine years old.  It seems like yesterday that I was pregnant with you. I loved being pregnant and was so happy to hear I was having a boy!  We knew right away we wanted to name you Max after daddy’s brother, Michael.  And then you surprised us by coming 4 weeks early. I had this little pain for a weekend and then there you were.  Butt first!!! So many surprises from you!!!  You were 4 lbs 15 oz and we called you our little “peanut”.  And you are still our little peanut. But now 58 lbs of a little peanut and only one foot shorter than me.  Nine!!! So big. You are still my sweet, sweet boy and so very inquisitive. You love to ask questions, over and over! And now you love reading (book 5 of Harry Potter) and you are becoming such a great athlete too. A few years ago I never would have thought you would be doing baseball and travel soccer now. We are so proud of you and love you so much.

Happy, Happy 9th Maxwell James!!!

April 22, 2009 at 10:39 pm Leave a comment

Peewee

That’s the name of the “cup” I bought the boys today for sports. You know what a cup is. Nate asked Max what it was and he said “you put it in your underpants so you don’t get hit in the balls”. Hope that wasn’t too graphic. But we are all about the “privates” around here. One thing is that right b/f we left for LA the boys went hiking with Matt. That night they went to take a shower and Nate screamed that there was something on his scrotum and it was a tick. Can you believe it? And I had to take it off with a tweezers.  Crazy!!!!! The poor guy.  And then he had another one on his ear.  And tonight my brother just called that my nephew has an infection in his scrotum. How crazy is that.  If these things weren’t so painful and sad for the boys they might actually be humorous. I think our life in general could be considered humorous if it weren’t so damn sad too. I guess those are 2 ways to look at our life: humorous or sad…. or maybe crazy….. or stressful….. or funny……. or scary…… or jinxed…… or mutant as my good friend likes to say……   I guess it’s good I can still joke about it all. At least right now while things are status quo it’s easy to joke about.

April 16, 2009 at 11:31 pm Leave a comment

Hairdresser

I reconnected with an old friend of mine from Manhattan yesterday. He used to be my sister’s hairdresser in the city when she lived there 20 years ago and then they became friends. And then when I moved to NY I became friends with him too, but then lost touch with him after I got married. He is one of those typical outwardly gay hairdressers who is also like your therapist. So not only did I have a fun lunch but a free therapy session as well.  He’s been in therapy his whole life and had a lot to say. It was very refreshing. He talked a lot about making ourselves happy and not relying on others to do that for us.  Matt and I have had some tough times since the boys were diagnosed and we have been arguing more than I would like.  But last night we had a really long talk and I think that my friend in the city helped me know what to say to Matt to help out situation. Marriage is not easy to begin with but when you throw in 2 sick kids it doesn’t help. Plus the fact that the economy sucks and Matt is so worried about losing his job. So many outside stresses. But we will get through it!

And on a side note one of the other pregnant women who I was in contact with had her baby and he looks good. He did not need to be on a ventilator and appears to be doing well.  He does not have a diagnosis of ARPKD yet, but we’ll see.

April 14, 2009 at 9:15 pm Leave a comment

It’s not a tumor

Remember that movie with Arnold Shwartzenager when he says that “It’s not a tumor”. Well thankfully my cyst on my liver isn’t one either.  It is a benign hemangioma! I still don’t have an answer to the weird sensation but everything is thankfully fine with my liver.

I am in LA right now with my boys. Matt stayed home to work and I came out here to my sister’s for Passover. I needed the break! Another baby died 2 weeks ago from ARPKD. I had been emailing the mom before the baby was born. That makes 2 in the past month or so. It sucks! I am in contact with 3 other moms. I am hopeful that it won’t be so grim for them. One of them has normal fluid levels, one has some fluid, and one does not have any fluid. I think 2 of them are at big hospitals so hopefully that will help.

And my vertigo came back. I think it is all of the stress and that I haven’t been careful with cutting out chocolate and caffeine. I am back to that though so we will see what happens. But I can live with it. It is obviously better than many alternative illnesses.

April 7, 2009 at 5:47 pm Leave a comment


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