Archive for March, 2009

Holy Crap

At least that’s what my friend’s response was when I emailed her this:

I’ve had this weird fluttering sensation in my abdomen for about 2 weeks. So yesterday I went to my primary care who thought possibly I had gall stones and got me in for an abdominal ultrasound yesterday afternoon. I called today for my results and my doctor left me a message when I was picking the boys up from school. Her message said to call her so she could go over my results. So I knew that something was up. We played phone tag for a little bit and then she got ahold of me. She said I don’t have gall stones but I do have a nodule/cyst on my liver.  Huh????  What exactly does this mean? Now most likely it is a benign cyst, but I am totally freaked out for various reasons. One I am just a neurotic person. Two our luck isn’t so great. Three I had a liver ultrasound 2 years ago at NIH and it didn’t show a cyst. Four she wants me to go get an MRI. Ugh.  When I asked Dr. Google he said liver cysts are related to Polycystic Kidney Disease. How funny is that? Well not funny per se but definitely ironic in the crazy scheme of my life!!!!!!! BTW I’m having the MRI with contrast on Friday at 1 PM. I’ll keep you posted.

On a good note though Gabe’s nephrologist emailed today and faxed his blood work results and all looks good!!! Yeah. His GFR is back up to normal and his iron levels are normal too. I am very pleased with this!  So it was just the infection back in December that screwed up the GFR results. And I am assuming the over the counter iron supplements have been working. Yeah!!!  At least I don’t have to obsess about this also.


March 17, 2009 at 11:27 pm Leave a comment

Another one

Another baby died on Friday from ARPKD. It was a mother I have been emailing recently. The doctors had given the baby no hope and the mom had not had amniotic fluid since about 20 weeks. But I was still trying to be hopeful. And I was trying to give this mom some semblance of hope. The thing is the doctors had no hope. And didn’t even really try to save the baby.  Which is just so frustrating to me. I know that every parent needs to make their own decision when the doctors say there is nothing they can do. But why do the doctors even need to say there is nothing they can do.  Why can’t they try as hard as they can to save these babies? Why can’t they do everything in their powers to save these babies? It is just so frustrating to me. And so very sad.

March 16, 2009 at 10:02 pm Leave a comment

Happy Birthday, Gabriel

Happy, happy birthday to you! I cannot believe you are three years old today. Wow, how time has flown by! Just yesterday you were my little peanut and now you are a big boy. And really growing into a little stinker! That’s what we like to call your brothers too! But boy are you developing your own little personality with the cutest facial expressions. When I ask you how old you are you hold up three fingers and then usually say “Four, that’s what you told me mommy”. It’s so silly and so cute!!  Boy are you cute!  And sweet!  And handsome! And funny! And cuddly!!

Sometimes I feel like I am not the happy mommy that I wish I could be. I hope you always know that I love you so very much and are so happy you came into our lives. And I wouldn’t trade you for anything!  But I just wish your kidneys were healthy and that I could be happy and not worry about you. But it’s not your fault and I don’t blame you. I am so thankful to have you and grateful that your diagnosis led us to Max’s diagnosis.  

Thank you for being you. Thank you for completing our family. Thank you for being so sweet!  Thank you for your hugs and kisses. Thank you for your love for your brothers.  

Happy Birthday and I love you.



March 15, 2009 at 11:51 pm Leave a comment


done!!!! My kitchen is almost finished! And I actually cooked in it for the first time. I made chicken parm and a salad last night and it was wonderful! There’s nothing like running water and a stove to make you feel good. We still have to do the backsplash, paint, finish up some electrical stuff, and some other odds and ends. But finally I feel human again. Today the boys had a snow day and Nate and I made chocolate chip pancakes together. It was so much fun. It was really good for him and good for me too. We had some bonding time, which honestly Nate and I don’t do often enough or very well. He is more of a daddy’s boy and we don’t always connect. But I feel really good about our day today. I am actually glad we had a snow day. It was nice to just hang out with the boys!

I got the order in the mail to do Gabe’s blood work to check his GFR since the one in December had gone down slightly. I am nervous about this and need to do it in the next few weeks. He has a 3 year check up on the 20th. Can you believe Gabe is going to be 3????? I can’t! Wow, time flies by way too fast.

March 2, 2009 at 9:42 pm Leave a comment

March 2009
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