My friend who writes an awesome blog often has posts that she titles “spoken in the mutant house”. Tonight Gabe said in the car that his tummy hurt him. I asked him where and he said in the middle. Then he said “my stomach is killing me”. I had said that last night after dinner!! Then he said “everything inside my tummy is killing me”. Interesting…. he often complains of tummy aches especially when he is in his car seat. I think it’s his kidneys all scrunched up but could be wrong. But I think it’s so ironic that he said everything in his tummy was killing him. It was so cute how he said it but sad too.

You cannot give from an empty vessel; to give to others, you must fill yourself.

A really nice cousin of my father in laws passed away on my birthday and I am so sad about it. Matt and I met him once a few years ago and since then I have somewhat kept in touch with him by emails. He lived in Provincetown, Massachusetts. He had just donated to our walk and sent a nice note. I’m not sure of the details but my father in law said he got some weird infection and passed away the next day. He was only 64 years old.  Since I have known Matt between the two of us we have lost I think 10 relatives. Some were closer than others but wow that’s a lot. This makes 11. Sad.  Life can be so scary. I would like to have no death or illness in our lives but that just doesn’t seem like it will happen any time soon.

I am still so amazed and frustrated by the misinformation that doctors out there give their patients. I have been reading a blog of a pregnant woman whose baby has cysts on the kidneys. They met with a pediatric urologist who first diagnosed ARPKD and then changed it to ADPKD because the look of the cysts.  The mother questioned the diagnosis of ADPKD because of a lack of family history.  According to this doctor: ”it once was believed that ADPKD had a 100% penetrance.  Meaning, if you have the gene you got the disease.  However, more current thought is that the disease can skip generations.”  These people are under the impression that they may be carrying the gene for ADPKD but never develop the disease. I am not a doctor but I do know that ADPKD is a dominant disease and you HAVE to have the disease to pass it on. It does not lay dormant in your body. Of course it is different in everyone and presents in different ways and at different times in ones life but it is just shocking to me that this is what these people were told. And what is also frustrating is the lack of education and information on ARPKD and when a doctor is presented with a case of possible ARPKD that might look different than the norm or actually might be not as serious as what you typically hear about then they don’t want to give a diagnosis of ARPKD. My two boys are a prime example of this. Max definitely did not present in a typical fashion and even Gabe at this point having 100% kidney function is not typical. And actually the first pediatric nephrologist we saw who is considered “very good” in the field and is at a good hospital would not give us a diagnosis of ARPKD. Interesting since the DNA testing done showed ARPKD. These doctors that give no hope for survival and then these doctors that don’t even know that ARPKD can present in different forms really frustrate me!!!!

And in honor of my b-day I am posting this poem by Washington Irving:

“There is in every true woman’s heart a spark of heavenly fire, which lies dormant in the broad daylight of prosperity; but which kindles up and beams and blazes in the dark hour of adversity.”

Taken from this article in USA Today about 13 kidneys that were received in the biggest kidney swap (http://www.usatoday.com/news/health/2009-12-14-kidney-swap_N.htm?csp=34)  Cut and paste it because I cannot figure out how to put a link in here!!!! And here is a poem listed there that I thought was perfect!!!

I called the family in the city to bring down more food today and when she answered her phone she said she had been trying to text me. We realized she had been texting my home phone so I hadn’t received the messages that her daughter received her liver and kidney transplant yesterday. I got the chills just hearing it and can only imagine what it must have been like for them to receive the call. I cannot even let my mind think about the person who had to die to give their organs because that would be just too sad. I can only think about how sick this girl with ARPKD was and how she can now get better and move on with her life. She was still in the NICU when I talked to her mom but both the kidney and liver were functioning.  I will continue to pray for her quick recovery and hope in the 3 months they have to stay here post transplant that we will be able to see one another.  And I also hope they enjoy the food I took them.

And on another note I gave blood today for the first time in many, many years and really felt good about it.

I have had 2 wonderful nights of Hanukah so far. Last night we had a really nice time at our temple celebrating the first night.  We had a service, dinner, and then they built a huge Menorah out of legos.  Today I spent the day making latkes (potato pancakes) that were yummy. We also had a brisket and edible dreidels!!  My mother in law gave me a beautiful bracelet for Hanukah that says: “Your work is to discover your work, and then with all your heart to give yourself to it.” -Buddha

1. Buy Hanukah presents – check!

2. Wrap said Hanukah presents (still need to do this…..procrastination!!)

3. Decorate the house for Hanukah – check!

4. Make shutterfly calendars for Matt, my parents, my in laws, Matt’s grandma, and my aunt – check!

5. Order flowers or some kind of holiday something for Matt’s grandma

6. Make donuts (sufganiyot – israeli donuts for Hanukah) for the boys’ Hanukah celebrations in their classrooms – half way there!

7. Buy dreidels and gelt (chocolate coins) for Hanukah celebrations in the boys’ classrooms – check!

8. Get change to bring in for the dreidel game in the boys’ classrooms – cannot forget to go to bank tomorrow

9. Order brisket and buy potatoes for Hanukah celebration here

10.  Work!!!!!  (wish I didn’t have to do this)

11. Go to the gym (wish I didn’t have to do this either!!)

12. Go into city next Tuesday for my own little birthday celebration!!!! I am very excited about this. They have this awesome craft’s fair in grand central so I will take the train down, shop around, squeeze in a quick lunch with Matt, and get the train back in time to pick up Gabe from school.

13. Celebrate Hanukah -obviously

14. Hopefully go skiing at some point

15. Take Max for his six month blood work (Gabe already did his)

16. Go to nephrologist for check ups on the 22nd.

17. help my in laws celebrate Christmas at their house

18. hopefully ring in a healthy and happy new year!!!!