Archive for November, 2009


We went hiking yesterday and this is the cute picture I took of my three beautiful boys. Thought I would have this as my post today. What I am so thankful for.


November 30, 2009 at 2:14 pm 1 comment

Today Show

My friend’s daughter was on the today show yesterday. They filmed a story on her a few weeks back about her kidney transplant and they finally aired it yesterday. I cried the whole time I watched it. It was so nice to see that story on the Today show and at the end the newscaster said Q’s mom wants us to make sure we mention how helpful the PKD Foundation has been throughout it all.  Great plug for the foundation and for PKD in general and so nice to see my friend and her family on tv!

Yesterday I dropped some food off in the city for someone who is here waiting for a transplant. They live in a different state but are listed here in NY for a double kidney/liver transplant. I cannot imagine just uprooting like that and staying away from the rest of my family in a strange city waiting for someone to die so my daughter could have a transplant. They couldn’t come to my house for Thanksgiving so I took them food yesterday.

PKD is never off of my mind. It is always there. If I am not thinking about my children or worrying about them then I am thinking about someone else’s child or worrying about a pregnant woman or thinking about ways the PKD Foundation can help me…..

November 28, 2009 at 11:29 am Leave a comment

Happy Turkey Day

I just finished watching the Macy’s day parade and have my 18 lb turkey in the oven! I already made the stuffing, cranberry sauce, and pumpkin pie. I have the carrot souffle ready to go in the oven and just need to saute some green beans. We are on our way!!!

I am most thankful today for:

1. My three beautiful boys

2. My husband of 12.5 years

3. My health

4. The boys “status quo” health

5. The roof over my head

6. The food on our table

7. All of my family and friends

Wishing everyone a happy and healthy Thanksgiving

November 26, 2009 at 12:14 pm Leave a comment

Square One

Well we are back to square one with Gabe’s weight gaining issues. The GI doctor called me last night around 7 PM and was not very helpful. I know for a fact the results were in by Friday and she says to me that she had just received them, which was frustrating. She then said it was all normal and that I must not be feeding him enough food/calories to sustain him. That really frustrated me. Of course I just sat there and listened and did not tell her how frustrated I truly am.  It’s great that all of his tests came back normal but I definitely don’t think he is not gaining weight because he is not eating enough food or calories to help him gain weight.  He eats a ton! And even if it’s not as much as I think it is other people have commented on how much he eats. And besides that he eats really well. He tries everything and eats most foods.  I did again reiterate the whole chronic kidney disease issue and the fact that he has adult kidneys but she said that since he has normal kidney function then that cannot be the reason. I wonder if there are any studies out there that talk about children diagnosed with chronic kidney disease but with functioning kidneys who have weight gaining problems. I think I will have to ask Dr Google that after I finish here. I need to also send an email out to the guru in the field and get her opinion!! And as usual I need to listen to my gut and just try things on my own. So I will need to research healthy high fat/caloric diets and see what I can do to fatten him up.

November 25, 2009 at 10:18 pm 1 comment

Welcome to Holland

Welcome To Holland
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever  go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

*     *     *

©1987 by Emily Perl Kingsley. All rights reserved.

November 24, 2009 at 4:59 pm Leave a comment

Sad Story

I read a really sad story recently about a baby who died from ARPKD. It really upset me. He was born with huge kidneys that were not functioning but actually only needed to be on a ventilator for a couple of days.  He then started breathing on his own. The doctors felt there was nothing they could do for him and did not feel dialysis would work on a baby that small. So they told the family to take him home and let him die.  He lived for seven weeks at home until his kidneys failed and he died.  That is such a sad story for me.  I know so many babies in the same position that were put on dialysis and did survive until they needed a transplant.  I think the parents did all they could given the information from the doctors but I don’t understand how the doctors could have made this decision.

November 23, 2009 at 12:40 pm Leave a comment

Wrap Up Party

Last night we had the Hudson Valley Chapter’s Walk for PKD wrap up party. K hosted at her house and she cooked a yummy lemon chicken. The rest of us all brought something and it was all delicious! There were about 15 of us there and our walk coordinator passed out prizes to everyone. I also won a first place plaque for having the team that raised the most money and one for being the top individual fundraiser. I am very proud of my team’s $15,300 we raised this year. K’s team came in second at just over $12,000. It’s nice to know that in the Hudson Valley alone over $27,000 was raised for ARPKD.  The last totals that came in for ARPKD teams was approximately $230,000!! How amazing is that??!!  It’s more than last year and I personally think an amazing amount of money for ARPKD research for this year alone! We are lucky to have the PKD Foundation supporting us and lucky so much money is being raised for ARPKD research!!

November 22, 2009 at 7:13 pm Leave a comment

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