Archive for March, 2012

Monday Memories

This is what life should always be like. Having fun and living in the moment. Of course it’s just not that easy and unfortunately every day life gets in the way. But I love the look on all of our faces in this picture. If only our life was this simple.


March 26, 2012 at 8:39 am 1 comment

Finally Friday

I was listening to the radio this morning and a host said “finally Friday” and I thought it would be a good blog title. I decided to try it out and talk about what I am thankful for this week in a sarcastic kind way.

Here goes…… It’s finally Friday and I am thankful:

1. that we only had to go to 2 specialists this week

2. that we did not have to make an unexpected trip to the pediatrician this week

3. that my boys went to school every day they were supposed to this week

4. that Max’s knee “syndrome” is fixable

5. that no one vomited on me at work this week

6.  that we saved 90 cents a gallon on gas this week because we spent so much money at the supermarket

7. my head only hurt 3 mornings this week and not every morning

8. that I only had one panic attack in the middle of the night

9. that I only paid one $40 copay this week

10. it’s finally Friday and I am laying in bed writing another blog post for the week and all of the boys are “healthy” and in bed and I get to go read my book 

March 23, 2012 at 9:15 pm Leave a comment

Big words

Max has been complaining of knee pain for a few weeks now. Of course he didn’t tell me right away but once he did I decided to take him to an orthopedist. In the last week or so he was slowing down while running and even limping on occasion. On Monday we went to the orthopedist who immediately diagnosed… are you ready for this….. Sinding Larson Johannson Disease. Now that is a mouthfoul!!!!  A syndrome to go along with his kidney disease. So now he has ARPKD/CHF, high b/p, and SLJD. Plus asthma but that doesn’t have any fun letters to go along with it!

In actuality Sinding Larson….. is just tendinitis of the knees. And it is very common in boys between the ages of 10-15 who are going through a rapid growth spurt and play a lot of sports. The ortho explained it is the tendon below the kneecap being stretched too much because he is growing and playing too hard. So he needs physical therapy (PT – more letters) 2-3 times a week for 6 weeks. 

In the scheme of things all not a big deal, except now we are adding another specialist to our list, more appointments, and more $40 copays!!!!!  

When I told my friend Julia she asked if we were competing with her for more syndromes!!!  Ha! Max also has the missing teeth and my family has these weird “ear pits”. So I think we might win with the obscure things!! Sometimes I just have to joke about it all because otherwise my brain would erupt!

March 21, 2012 at 2:39 pm 2 comments

Not compatible with life

How is it that in this day and age so many doctors are still so misinformed about ARPKD? It is so sad and frustrating to me. I received an email from a woman who recently lost a baby to ARPKD while she was pregnant and the doctors had said that the baby was incompatible with life. I often hear this and also that there is no hope for survival. “Incompatible” and “no hope” should not be used with ARPKD, ever!!!! I know I often worry that I am giving too much hope to some expectant parents but ARPKD is not a disease that is incompatible with life. What is incompatible is the 30% of babies who die at birth from ARPKD mostly due to their lungs not being developed enough because of the lack of amniotic fluid. And I honestly believe that some of that 30% is due to misinformed doctors. Doctors who tell the parents there is no hope for survival so no extreme measures are given or doctors who do not seek the information they need to help the baby, such as removing kidneys at birth if needed.

The parent who just emailed me assumed I had lost a baby to ARPKD and when I told her I had two sons living with the disease she said she hadn’t realized that was a possibility. And look how mild Max is! And even Gabe compared to other children with ARPKD. I get so angry when I hear this because I would love for that 30% to go down but with doctors who give no hope then it might never get better. And yes I do know some babies with ARPKD will not survive no matter what kind of care is given after birth. But I honestly feel that it doesn’t have to be 30%. And no I am not a doctor and do not have true facts for that but just from hearing so many stories about babies who were not even put on life support or parents who are told to take their babies off of life support or parents who are told to terminate pregnancies. I often think that if we had not put Gabe on a ventilator he would not have survived. I am not sure what we would have done if Gabe had a prenatal diagnosis of ARPKD and the doctors said it was not compatible with life and we should not put him on a ventilator and prolong his suffering. What decisions would we have made? But we are so lucky and grateful we did not have to make those decisions and that the best medical care was given to Gabe.

The problem is how to educate more doctors. How to get the word out that ARPKD is not incompatible with life and there is hope for survival with most babies with ARPKD. And that lung development is key to helping with survival.

My thoughts are often with these parents who have lost a baby to ARPKD. How can I support them and help them in the best way? I cannot even imagine the pain of losing a child. Plus the fear of having more children. Plus not having doctors who can help give hope for future babies with the disease. But the main thing I know is that I wish that no doctor were to say that ARPKD is incompatible with life ever again.

March 19, 2012 at 8:17 am 2 comments

Happy 6th birthday Gabe



You have come a long way!!!!

March 15, 2012 at 7:52 pm Leave a comment

Nothing is easy

We went to the nephrologist a few weeks ago. This was Max’s first visit with him and Gabe’s second. He asked me how long it had been since we did 24 hour blood pressure readings on the boys and I said almost a year. So he decided to do them again. So last week when I was doing the “poop run” I picked up the b/p monitors. Saturday afternoon we put them on the boys. Of course they both complained about it! Gabe said it bothered him and Max didn’t want anyone to see him wearing it. We decided not to go to a party we were supposed to go to and just hung around the house. I was going to drive the monitors down to the city on Monday but Gabe got sick so I wasn’t able to drop them off. Matt said he would drop them off on his lunch yesterday.

Today I received a call from the nephrologist with some concerns with both readings. For Gabe he said during the day the readings were all great but at night in the middle of the night there were a few high readings, which concerned him. And then for Max he said only 10 readings out of 56 were normal and none of those 10 were below normal. And of the high ones they were really high like 150/70. So….. we have to repeat the 24 hour b/p readings next week!!! He said either Max’s machine malfunctioned, the cuff was too large, or his b/p really is that high. Let’s hope it was one of the first two.

The thing is I just feel like nothing is easy. First of all the obvious… it’s not easy for them that they have ARPKD. Then it’s not easy that they have high blood pressure. And then they have to do 24 hour blood pressure readings. And then it didn’t work out the first time!!!! I know in the scheme of things 24 hour b/p readings are easy. But it’s just our luck they didn’t work the first time. I’m just overwhelmed by it all!!

The diagnosis itself. The 8 pills a day Gabe takes and the management of those. The 5 pills a day that Max takes and the management of those. The 6 specialists Gabe sees and the making of the appointments and going to the appointments. The 3 specialists Max has. The management of their blood pressure by taking it routinely and keeping track of the numbers. The worry in general and then the worry that Gabe isn’t gaining weight or growing, the worry that their blood pressure is too high, the worry that their blood work isn’t normal, the worry that their kidneys are starting to fail, the worry of what their liver disease holds for them, the worry that Gabe will never be dry at night, the worry that puberty will cause Max’s kidneys to start to decline, the worry that our insurance doesn’t pay for enough anymore and the bills are getting out of hand, the worry that they will not be healthy for their whole life…… and the list goes on and on.

March 14, 2012 at 8:26 pm Leave a comment

World Kidney Day


March 8, 2012 at 10:13 am Leave a comment

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