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…..

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

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.

Welcome to Holland

Welcome To Holland
by
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.

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.

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!!

Tired

as usual!!  Gabe went to bed at about 8 last night and woke up crying at 9:30. He was actually screaming in pain and said his ear hurt him. I took him to an after hours pediatric practice and he has a double ear infection!  They gave him numbing drops and then when we got home I finally got tylenol into him and he finally calmed down. We finally fell asleep in my bed a little after 11. It was a long night!  So we are both tired today, to say the least!  Poor little thing. First it was the croup, then a bad cough and cold, and now a double ear infection. All in one week. Now of course I’ll take these common childhood things over the bigger things but I just feel like we never get a break around here.  Hopefully now that he is on an antibiotic he will be on the mend!!! We get our H1N1 shots on Monday.

Frustrated

I’m frustrated I didn’t post yesterday but my friend, J, says I need to get past that!! But really I’m frustrated I don’t have Gabe’s stool sample results back yet. The nurse yesterday said they were not back yet. Today when I called they were back but the doctor has not reviewed them and will not be in until Tuesday. The nurse said to her they look okay but the doctor needs to look at them. She then said to me “is he still symptomatic”. What did she think that we really didn’t have that big of an issue that resolved itself but we decided to do a 72 hour stool sample anyway.  I am so frustrated. I kept saying that to her. I asked her to fax the results to me but she wouldn’t since the doctor hasn’t seen them yet.  I am such an immediate gratification kind of person and hate waiting for things, especially test results. I have a feeling we are going to be back at square one and I am going to be even more frustrated. Frustrated that the nephrologist won’t blame Gabe’s chronic kidney disease as the reason why he is not gaining weight and frustrated that the GI doctor doesn’t know why either.  And really just frustrated that Gabe isn’t gaining weight.

ARPKD Angels

The wonderful moms I have spoken about on a few occasions who have all lost babies to ARPKD and started an ARPKD angels group on facebook have also started a website. ( http://arpkdangels.webs.com/) Their title says:

“Support for families who have lost a child or those who have received a neonatal diagnosis”

These women continually amaze me with their courage to talk about what they have been through and the strength they offer other parents.  And mostly their honesty of what it is like to lose a child.  I wish I wouldn’t have to refer new moms there but I know I will in the future because unfortunately there is still not a cure or a treatment for ARPKD and so many babies and older children as well continue to die from it.

American Education Week

This week is American Education Week and the schools around here invite the parents in to the classrooms to view a lesson. I went into Nate’s class today and am continually impressed by his teacher. Max had a different first grade teacher who I loved but I had heard good things about this one. She is just amazing! Nate is doing so well. He is reading so much better than I could have anticipated and he loves school! Beyond that the teacher said he is doing a great job in class! Today’s lesson was with letters and moving them around to form words.  I just love the way she talks to the kids and how she teaches. Even when she is disciplining she is doing it in an amazing way.  So far out of the 7 teachers we have had at this school (5 for Max and 2 for Nate) we have LOVED all of them except for one! Isn’t that unbelievable. I don’t think it’s possible to have a great teacher every year but to have liked them as much as we have for all of the years except one is pretty incredible!!  Tomorrow I will go into Max’s class and know I will be equally impressed. Max has a veteran teacher who has been teaching for I think almost 30 years. And it is a male teacher, which I think is also so nice. My favorite teacher in elementary school was Mr. Abbott in fifth grade. I wonder whatever happened to him?