Advocating

I think I’m a strong person and usually stand up for myself. And I know that I have posted about this before. But it is hard to be the best advocate all the time for my children. What I am struggling with this week is that I’m not sure I completely agree with my pediatric nephrologist’s opinion on blood pressure.  We started out the week with me emailing him to talk about Gabe’s blood pressure. Right now it is ranging slightly over the 90th percentile.  I have this application on my iphone that gives me Gabe’s height and weight percentages for growth and then tells me what his blood pressure should be at the 50th, 90th, and 95th percentiles.  (And yeah, I might be slightly obsessed with this particular app!!) So when I plug in Gabe’s information it tells me his b/p is above the 90th.  It says that the 90th percentile is considered prehypertension and the 95th is considered hypertension. So in my opinion don’t we want Gabe’s b/p to be well under the 90th percentile???? At the beginning of the week my nephrologist said he is okay with it right around the 90th.  We’ve been back and forth this week with emails. The first email I was upset with but then today he wrote me an email without me writing first. He said he had done some more research on the subject and sent me the article. He then said what the 50th percentile would be for Gabe and said we should try to target more b/p’s near there. Interesting.  I had expressed my concerns and talked about what the research said but I had never mentioned the 50th percentile. So today I am happier with the outcome of the week’s emails.  I am also happy that he was willing to do some research on his own and talk to me more about it.  The other day he said let’s talk at our next appointment, which won’t be until July, so I am much happier now. We are going to try to switch Gabe from liquids to pills and the pill dosage is a slight increase of one of the meds, which will hopefully bring his b/p down even more.

The thing is that sometimes I just get tired of having to advocate for my kids. Don’t get me wrong I would do anything I had to for them. But sometimes I just wish it was easy.  To begin with ARPKD is on my mind every day. And then to add in these extra things really stresses me out and sometimes just pushes me over the edge.  Right now I am considering taking Gabe to an endocronologist to talk about his growth and growth hormones. I am constantly worried about the fact that he is not gaining weight like he should. I worry about his and Max’s blood pressure. I worry when they complain of flank pain.  I worry that their livers might be the silent problem that will attack us out of the blue.  And then on top of all of that I worry about their life in general and Nate’s, you know the normal stuff like them having friends, being happy, having fun, doing well in school………….I admit I am a worrier.  It’s who I am. But it sucks to have all of these extra things to worry about too.

So I am pleased that my emails this week have turned out okay at this point, and I know I’ve done a good job advocating for Gabe. But I might be feeling a tad bit sorry for myself that the boys have ARPKD and we have to deal with it. I might be a tad bit jealous of my friends with healthy kids who don’t have to deal with these particular issues.  And I might just be a tad bit sad this week. I’ll get over it and I’ll continue to advocate for my kids because it’s what I need to do and want to do for them. But, I might still complain about it every once in a while. Because as my therapist says no one is perfect!!!

Monday Memories

This is a picture from Gabe’s bris (Jewish circumcision ceremony). We did this when Gabe was about 6 weeks old. It is typically done 8 days after the birth but since he was so sick we could pick when to do it. It was a very bittersweet day. This bris is a big celebration in the Jewish culture but he had just been officially diagnosed with ARPKD about 10 days before and Max had actually been diagnosed with ARPKD 2 days before. So to say the least it was a tough day for us.

Moms like me

This past weekend I spent the entire weekend with two moms who have children with ARPKD.  It’s amazing how comfortable I feel with them. It’s also amazing how fast these friendships have grown into ones that will last me my lifetime and that I know I can count on. It’s not just that they have children with ARPKD. That’s what brought us all together. But, we all decided that if we had met in other ways we would still be friends.  They just get me. In so many ways.  And I am so grateful and thankful that they are in my life.  Not only can I talk to them as much as I want about the boys’ health but I can also count on their support in my life in other ways.

We also hung out with two other people who do not have children with ARPKD but have turned out to be amazing friends as well. I would not have met them either if not for my boys being diagnosed with ARPKD.  It’s interesting and ironic that because my boys were diagnosed I now have these four new friends who I feel like I have been friends with my whole life.  The only problem is that three of them live out of state, which is a bummer.  But thank goodness for texting and emails!!

Middle

I worry about Nate a lot. He is the middle child and kind of marches to his own beat.  I always said he was born the middle child. He just likes to do things his own way. But he is also difficult on occasion and obstinate. I think he gives me the hardest time. He had the terrible twos, then the hard threes, then the (excuse my language) f-ing fours, but at five started to calm down and then by six was great. But the last few weeks have been a night mare.  He had been sick for a week with a fever but ever since then cries at the drop of a hat and can’t deal with any type of issue.  It’s frustrating and worrisome for me.  I am hoping he is just going through a phase and will go back to his old self. So many people had been telling me how he had matured and I hope that is the case and this isn’t a major setback. It just worries me.

Monday Memories (on Tuesday because yesterday got away from me)

This is when Max was born and our life was blissful.  We had no worries and had never heard of ARPKD and were not even thinking of something like that. To go back to the days of naivety…….