Archive for March, 2010

Monday Memories

The newest edition to the Karl family. Of course a boy.

March 29, 2010 at 5:36 pm Leave a comment

Sad….really sad

I became friends with this woman last year who lost a baby to ARPKD. We started emailing back and forth. We emailed a couple of times before her son died and then started staying in contact a lot more. She became pregnant again and again found out her baby had ARPKD. This time it seemed more hopeful though. She had fluid until much later. And I think she actually had a small amount of fluid the whole time. She also gave birth by C-Section this time, which I always think is a better option for the baby. Well, she gave birth to her daughter last Thursday and the baby died about 6 hours after she was born while on the ventilator.  I am so sad for her. I cannot even begin to imagine her pain. I cannot imagine losing one child, but two. It’s just plain horrible. And just really, really sad.

March 23, 2010 at 3:43 pm Leave a comment

Monday Memories

This is what I originally wrote for Gabe’s birthday and then forgot to post!!
Dear Gabe,
Happy 4th Birthday! I cannot believe how fast the last four years have flown by. I also cannot imagine what our family would be like without you in it. You complete us! You are the silliest yet sweetest boy. You still love to cuddle with us but are also very independent. You are always saying “my can do it”!!! Stubborn, just like your brothers. And boy do you love your brothers. You are constantly trying to keep up with them, and do a pretty good job with it. We love you so much!!

Continue Reading March 22, 2010 at 9:17 pm Leave a comment

Craziness

That’s really just what our life is all about. Matt likes to say we are jinxed but I just think it’s crazy. Here is a list of what has happened to us in the past week and a half or so.

1. 3/9 Matt goes to an after hours clinic because of a possible sinus infection. The nurse takes his blood pressure, tells him it’s “stroke out” high, and then sends him to the ER in an ambulance.

2. Matt stays in the ER from 8 PM to 1 AM. The doctors cannot figure out what’s wrong, but do rule out a few things and get his b/p down to 166/88 and discharge him.

3. The next morning we see our internist who wants to run a whole bunch of tests to rule out some crazy things like renal artery stenosis ( yeah – that’s related to the kidneys but unrelated to the boys’ PKD) and some other things.

4. On Thursday morning, Matt has an MRI of his kidneys and renal gland at 7 AM. At 3 PM we see a nephrologist at Montifiore who was squeezing us in as a favor to a friend.  Matt’s potassium had been low in the ER so she is wondering if it is something related to his adrenal gland. His b/p is still high ranging around 140/100.  She says to run all of the tests that were ordered and then come back and see her with all of the results. The MRI was clear so he does not have renal artery stenosis.

5. Matt has an echocardiogram. Still not 100% sure of these results, but think it’s okay.

6. We squeeze in going to Max’s last basketball game amongst our craziness. Trying to keep things as normal as possible for the boys.

7. On Saturday, I have an all day PKD educational seminar in Manhattan. I leave this early to get home to go to a sonogram with Matt at 3 PM. The technician is annoying and won’t tell us anything!

8. We leave the sonogram to eat dinner at our friends’ house, the one who has been watching the boys for us. There is a crazy wind/rain storm going on. We leave her house and drive home. On the way home a huge tree falls on a car three cars in front of us. The people have to climb out the back of their jeep. Their car is smoking. It was crazy!

9. We get home and pull into our garage. I get out of the car and hear a huge noise. It’s our neighbors tree falling into our front yard and hitting our tree and the light and telephone wires. The lights on the street go out but ours stay on because we are on a corner. The boys freak out and sleep on the floor in our room because their room is right next to where the big tree fell and there is another equally big tree waiting to fall. About 9 PM the wires are sparking and finally spark enough to take out our electricity.

10. Sunday, March 14th. Gabe’s Birthday party is scheduled for 12 PM at our house. We have no electricity, no phone, and a huge tree down in our front yard blocking our front door. I cannot find anyone’s phone number but want to do the party. Right at noon a huge rainstorm happens and everyone who could get to the party gets soaked. Four people couldn’t even get to the party. Some say it took them 20-30 minutes to try to get to our house before they turned around. There were trees down everywhere. At the top of our street you couldn’t turn right or left because there was a tree down on both sides.

11. Great birthday party amongst the craziness!!!

12. Our lights stay out until Tuesday night. Monday night it goes down into the 30’s and is pretty cold in our house. Monday the boys didn’t even have school because the city felt it was too dangerous to have the buses going around picking up the kids. Gabe didn’t even have school Tuesday or Wednesday because his nursery school was without power.

13. Friday, 3/19, we still don’t know what is going on with Matt. He had to do a 24 hour urine test, fun, and some of the numbers were off but our internist isn’t concerned. It took all week for our internist to get us the results…. we are now looking for a new internist. Meanwhile we have to take all of the results back to the nephrologist and see what she says. His b/p is still high. The top number is staying around 140 or 150.

This is our crazy life. Now……. no one was hurt in the storm, which is a major thing. And our house is fine. But, I am so worried about Matt and the extra stress of the huge tree in our front yard isn’t helping. Oh, and did I say that it is our neighbor’s tree but if your neighbors tree falls into your yard it is your responsibility to clean it up. And did I say that it is a huge, well over 50 feet, pine tree? And did I tell you that our neighbor made sure to cut away the five feet of the tree that was blocking his driveway but left the rest for us. And the city doesn’t care and the cable and phone companies don’t care even though the tree is hanging on their wires. Our neighbor told us his tree guy would charge him 1000 dollars to take away his part and charge us 2400 to take away the part on our property. His tree that is on our property. Unbelievable!!!!!!! So right now as I type this Matt is outside with a saw and another nicer neighbor trying to partially get rid of this tree.

Jinxed or just plain craziness… who really knows. If it were not so crazy it might actually be funny. Maybe???

March 20, 2010 at 9:49 am Leave a comment

Happy Birthday, Gabriel!!!!!

Four years ago today was one of the scariest days of my life. But now looking back I also know it was one of the best. Our third beautiful boy, Gabe, was born. He was born at 12:59 PM on Wednesday, March 15th, 2006, weighing 4 lbs 14.8 ounces.  Wow, how time flies. It is so hard to believe that today he is four years old. What a big boy. And so sweet! He is the cuddliest boy and loves to give hugs and kisses. He is also very funny and knows he is cute!!!  Health wise he is status quo with a few minor bumps in the road that we are working on!!!

Happy, Happy 4th Birthday, Gabriel!

March 15, 2010 at 10:30 am 1 comment

The Walk

I found out recently that the 09 Walk for PKD raised over 2.5 million dollars.  I also found out that ARPKD families raised 215,000 dollars of that money. I don’t know percentage wise what that is but it is amazing! And so inspiring! There were 69 ARPKD teams in over 34 cities!!  We are lucky to have the Foundation supporting us and they are lucky to have us!

March 11, 2010 at 12:47 pm Leave a comment

Blood pressure

This whole blood pressure thing is frustrating to me. What’s frustrating is that they have high blood pressure to begin with and have to take so many medications to control it. I know part of it is that they are growing which makes it harder to regulate. But we just added a second med to Max’s regimen and Gabe is on three. Max takes one pill twice a day and now the second pill once every other day. And if we switch Gabe to pills then he will take a pill combo which is a combination of two pills but he will take 1/2 a pill twice a day and then the other pill will be a full pill in the morning and a half at night. Confused yet? Because I am. Today I went to pick up the prescriptions and the pharmacy tried to confuse me even more by giving me one of the prescriptions in two bottles because they had filled part last week and the rest today but they were different manufacturers so they were different pills. Huh? I was so confused there and the lady behind the desk was not the friendliest. So I said to her that it is hard enough to have two children taking five different pills and I didn’t need for them to confuse me even more by having one pill be two different colors and I would never know what was what.  I’m even confused writing this and thinking about it. And what is even more frustrating is that I have to take their blood pressure at home to make sure it is under control. It’s a lot of pressure on me to one remember to take it, two to write it down so I don’t forget, and three to actually monitor the numbers to make sure they are what they should be. Of course as usual I will say that in the scheme of things their blood pressure is not crazy high and they have good kidney function so since we have no choice but to have ARPKD in our lives we will take it like it is for now. But I just hope the pills go smoothly for all!

March 2, 2010 at 10:15 pm Leave a comment

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