Archive for July, 2009

Appointments

Max has this annoying mole in his ear and the dermatologist said we had to remove it but that he had to go to an ENT to do it. Yesterday we went to a great ENT who said she agreed that it has to be removed but that she has to do it in the OR with anesthesia. Ugh! I know it’s no big deal but I wish he didn’t have to be put under or it! I told my mom that Max had to have surgery and she said “oh….we played golf today and the weather was good…” She is just so emotionally detached!

Last Saturday the boys had blood work done and Thursday they have sonograms of their kidneys, liver, and spleen. Then Friday we have a nephrology appointment for our six month check up. I’m not expecting any major surprises but wish we didn’t have to go.  Every day is hard with the boys have ARPKD but when we have these check ups my emotions get all crazy!

July 28, 2009 at 10:08 pm Leave a comment

Max is back!

Yesterday we picked up Max from sleep away camp. He had been there for three and a half weeks and had a blast! For a while it felt like I had a “healthy” son who was able to do typical things like all of the other kids around here. I didn’t constantly worry about the ARPKD thing and just worried he was having fun. It was nice to think that way. I wish I could always feel that way. But then the worry comes back and I wonder what will happen if he starts taking more meds for things or when Gabriel goes to sleep away camp will it be the same way. The camp said lots of kids take lots of meds for lots of reasons. But will it ever be too much for them to handle? Will they ever not want my kids with ARPKD to go to their camp b/c they just don’t want to deal with it all? Sometimes I just don’t want to deal with it and I worry that others will feel the same way.  I want them to have as normal a childhood as possible given this predicament we happen to be in. It is so hard for me to stay in the moment and not worry about the future, or their future to be more precise. You want the best for your children and you want them to have easy lives, but it worries me that theirs will never be easy and once symptoms start to creep up more then they will be so much less easy then they are now. But I am so happy that Max had the best time at camp and had as normal a summer as he possibly could have had. I just hope for the same for the upcoming summers for Max and Gabe.

July 22, 2009 at 11:10 am Leave a comment

Another baby

Another baby died today from ARPKD. He was over a month old. He was very severe at birth and they had already removed both of his kidneys. I don’t know all of the details but know they couldn’t get him off of the ventilator and his blood pressure dropped too low. That is really all I know. But I am so saddened by this. Every time a baby dies from ARPKD it is so frustrating to me. And I know I am just hearing about more lately because of my involvement with the foundation but it seems like so many more lately. This was a baby who I had been in contact with the grandma. It is always sad but always so much harder when I had been in personal contact with the person. Just another name to add to my “Remembrance” list that is getting too long.  I want to remember these babies but wish I didn’t have to keep adding names to the list. I hope one day that no babies will die from this disease. But I have a feeling that is wishful thinking and way too hopeful and probably will never be. Which is just so darn depressing.

July 12, 2009 at 10:32 pm Leave a comment

12 Years

Monday was my 12 year anniversary. Sometimes it feels like yesterday that Matt and I started dating and were married and sometimes it feels like a life time ago.  I have lived in New York now for 15 years and soon it will be more of my “home” than Kansas City ever was. Eventually I might have to stop saying I grew up in Kansas City because really I will have lived in NY longer. Back to my anniversary though. Without Matt and I there would be no Max, Nate, or Gabe so I am grateful for that among many other things. So Happy 12 Year Anniversary Matt.

July 9, 2009 at 1:51 pm Leave a comment

Back to reality

I thought I posted this last week but realized I didn’t. Someday I might lose my head if it were not attached!!

Five days with my BFF who has 2 kids with ARPKD and now back to real life. Even though it sucks having kids with ARPKD it is amazing having other moms who can totally get how I am feeling. And spending five days together without more than about 5 minutes of alone time was just what the doctor ordered!!  Not to mention the convention was so informative. And I even spoke at chapter training, which I am so proud of myself for. Julia and I spoke about conversations we have with pregnant moms who just learned about ARPKD and moms who have children who were just diagnosed and moms who had babies die from ARPKD. We talked to other chapter coordinators from around the country to help them understand ARPKD more and to make sure they refer these people to us to support. We had so much positive feedback from our talk and so many people want to learn more about ARPKD. I wish the doctors out there felt the same way. There is still so much misinformation out there.

Next year the convention is going to be in San Diego in August. Hopefully before that time I can meet up with my friends with kids with ARPKD for a girls’ weekend! We need to get together more than one time a year!

July 6, 2009 at 9:39 pm 1 comment

The Walk for PKD

I’m getting geared up to start my annual fundraising efforts for the Walk for PKD. This will be my fourth walk! In total I’ve raised over $58,000 for the last three walks. I’m pretty proud of myself and also pretty obsessed with doing the same again this year. I made my goal at a lofty $18,000 this year. I am focusing it all on the number 18 which is “chai” in Hebrew and means “life”. I know the economy sucks but hopefully I can get a ton of little donations to equal one big number!  I’m also pretty obsessed with just getting the word out about PKD and raising awareness of ARPKD so even if not everyone donates (I hope they do) I will have at least educated someone about ARPKD and PKD in general! I’ll post again once my page is up and running. I’m trying right now to just get all of my contacts loaded in. I love my Mac but it doesn’t always sync up with these programs to transfer all of my contact info over so I have to enter them in one by one, which is time consuming to say the least. Last year I sent out over 400 emails!!!  I know my friend, JR, is loving that last statement b/c she is so not a Mac person and makes fun of me for it! But really all of the best and brightest use Macs, like your “girl crush” JR!!

July 5, 2009 at 11:29 pm Leave a comment


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