Short and Sweet Urology Appt.

On Monday, Blake and I headed to Iowa City for a follow-up urology visit.  If you remember back in July, they told us his bladder only held about an ounce and Blake was put on some medicine to relax his bladder and hopefully to make it hold more.

We ended up only having an ultrasound on Monday.  The doctor said that everything looked pretty much the same as back in July and we talked about the bladder augmentation surgery.  Dr. Kieran said Blake would need about three months of healing time in between the bladder surgery and his transplant.

She also told me again that he would probably need to go on hemo dialysis, BUT (a very small silver lining) she might, maybe, there's a super small chance that she can cut around the peritoneum (what he currently uses for dialysis), but she won't know until she actually gets in there.  I'm holding out hope!!  If she can't that means three months of hemo in Iowa City most likely three days a week. 

Other good news from the consult was that she is fine with waiting until the spring for the bladder surgery.  Since it will be me driving down to Iowa City, I don't drive in snow.  It freaks me out.  This way, it will lessen this mama's stress level a little.  :)

We go back in March/April for another appointment and to set-up plans for the surgery. 

Happy Pumpkins

While the weather was still nice last week the kids and I sat in the front yard and painted our pumpkins.  I don't know why I'm not a carver.  Probably because it will end up being me doing most of the work?!  For whatever reason, I have always just had the kids paint pumpkins.  They seem to love it and we will do that until they decide they want them carved!

 Pumpkins. Paint.  Old Newspapers. Brushes.  We were ready to go...

 Brody whipped through three pumpkins like nobody's business, but Jenna only did one.  She was very meticulous with her pumpkin. :)

 Bright, happy colors!

 In her defense, Jenna's pumpkin was ginormous!

 And yes, I even painted a few pumpkins too.  This one was my favorite.  Go Hawks!  Go Trojans!

 Jenna's finished product

 When we painted the pumpkins we were in our shorts.  I shot this picture of the kids about a week later.  Four little pumpkins!

 

Oh!  And I had these all nice and arranged, but a certain four-year old who shall remain nameless took it upon himself to liven things up a little bit.  Here is his creation:

 

 It was darn cute and creative I couldn't bear to put it back to the way it was! :)

HAPPY HALLOWEEN!

Baby Carter coming soon!

My sister is having a baby!  My baby (and only) sister, who is seven years younger than me is expecting a little boy in January (or maybe December according to the latest doctor's appointment).

Anyway, she asked me if Aaron and I would take some maternity photos for them.  I said yes, but I was freaking out because I (we) didn't really know what we were doing! 

We were up in Cherokee for Jess' baby shower this weekend, so we decided we better get them done just because we see each other sporadically.  It was a total group effort!  Aaron, Justin, Mandy, Patti and I all went along and these are some of my favorites:

 I have to give my sister-in-law Mandy credit for thinking the tracks would make for a cool background.  I think they are really neat and I liked these a lot. :)

 There really is a bump there.  Jess was blessed with tall genes, so I think she's barely showing...

 We had to take a quick snap of them with their first ''baby'' Pepper!

I think we did pretty good for our first time out.  I just hope Jess and Mitch like them since this is my shower gift to them! :)

Future Wrestlers?

I remember when I was pregnant with the boys and I was at the high school wrestling pictures and I was talking to the coach and told him we had just found out we were having twins.  He said, "Twins?  You do realize that a lot of twins end up being wrestlers, right?"   At the time, I laughed.  Now?  I'm not so sure he was too far off.

 The other day the boys were wrestling on the floor and so I quickly grabbed me camera to capture it.

 Bowen (in blue) is definitely Mr. Aggressive, while Blake (in brown) is Mr. Laid Back.  Bowen was all about the wrestling and Blake pretty much laid there and took it while laughing.  It was pretty funny.

 Bowen is such a moose!  He has about a 3 inch and 3 pound size advantage.

 Impressively, Bowen was actually trying to turn Blakers over on his back.  We aren't even a wrestling family, but those are some good instincts. :)

 So, after watching for a few minutes the mom decided to see what would happen if Blake was in top position.  Do you see all the drool marks on Blake's back, by the way?

 Blake was actually more fiesty than I expected.  I was kind of proud of him for going at Bowen.

 And, that's a pretty good shot to the eyeball.  About this point Blake started trying to bite, so I called an end to the wrestling fun...

 Post wrestling match...

 Do you see why I love these two?!  Those smiley faces.  It just doesn't get better than that.

 Blake

 Bowen

I guess time will tell if we end up having wrestlers.  I'm actually not even sure if that would be possible for Blake.  We know football is a never-going-to-happen sort of thing, but I can't remember what the docs said about wrestling.  Hmmmm...I might have to ask about that.  :)

The way I see it...

Thank You!

Have I ever told you the story about how I got this job?  I went in to renew my subscription when then-editor Andy Kopsa told me I should apply for her job because she was leaving.  I laughed and told her I had no experience.  She said she didn’t either.

When I got home I jokingly told my husband about the conversation and he was all, “What do you have to lose?  Just apply.”

Well, after a year at the paper and being let go when the new owner came along and then being back at the paper when Greg bought the paper, here we are!

I have to be honest with you all.  I was scared to death when I accepted the job at this paper.  Besides the fact I was lacking in experience, I wasn’t from here.  At that point, I didn’t know the communities that well.  I was mainly scared because, being from a small town myself, I know how protective small towns can be when ‘outsiders’ come in.  I don’t mean that in a bad way, I just mean I knew I had to earn your trust.

I felt that the best way for me to do that was this corner of the paper right here.  I knew that I had to be open and honest with you and let you get to know me and then you could decide if you thought I was alright.

Well, Mid Iowa Enterprise family, you have shown my family and me the love!  At our benefit last Friday night, it was reaffirmed to me that I am so glad that we are here in this community with people who are incredibly supportive of us and what we are going through.
I cannot believe how many people showed up.  I’m just in awe.  My husband and I tried to talk to as many people as we could, so if we missed you I’m sorry about that.  Please know that we thank you for coming!

Not only did you show up, but you asked really good questions about Blake.  Does he pee?  A little (very little).  Does he have a catheter?  Nope.  He really is going to get one adult kidney during his transplant?  He sure is.  Is Blake always so mellow?  Pretty much. I got a lot of comments about his demeanor, which I thought was super perceptive of you.

I just can’t say thank you enough for reading my column week after week.  For letting me be honest with you and share my happy times and my sad times.  I appreciate that I don’t have to be something that I’m not week after week.  Thank you for letting me be me and going on this journey with me.  I will forever be grateful to you all for that, but that’s just the way I see it.

Blake's Day

It occurred to me that I've never really blogged about what our day is like with Blake.  For the most part, he really does get to be a normal kiddo during the day.  It might not seem like it, but he does and for that we are grateful. 

Blake gets meds four times a day.  In the morning he gets all of them, 7 in total.  He gets two at NOON, one at 5 PM and 4 at bedtime.  This would be a "Jamie's department" sort of thing.  They continually tweak and make adjustments, so I'm the one that always knows the current dosages.

A lot of Blake's meds are vitamins and supplements.  Because the kidneys can't do what healthy, functioning kidneys are supposed to, Blakers just needs a little help.

This is Blake's abdomen region.  I'm not sure if this would freak a person out or not.  Aaron and I have been looking at this for the past 17 months, so it's just normal to us. 

On the left hand side is his dialysis catheter.  On the right hand side is his g-tube. 

The end of his dialysis catheter.  No, it doesn't get any shorter than that.  We have some netting that we tuck it in to.  That cap on the end?  We take that off and that's what gets hooked up to the dialysis machine.

 This is the g-tube with his extender piece in.  This is used for his feeds since Blake hardly takes anything by mouth.  Kidney kids have an oral aversion since they feel sick to their stomachs all the time.  In addition to feeds, it is a lifesaver because we give Blake all of his meds through this as well.  It goes right into his tummy.

This is what the g-tube looks like without the extender piece in.  It actually kind of reminds me of the top of a beach ball.  It sticks out kind of far, but not terrible.  We have to keep onesies on him so it doesn't catch on anything.  Yes, it can come out.  Yes, it has come out.  Yes, we can put it back in ourselves, although I would rather have Aaron do it than me.

So, when we go to give meds we take the plastic top thing off.

 And get ready to put the extender piece in.

 And in go the meds.  It's pretty simple actually. :)

 Blakers knows the drill...

 And so does Bowen.  I actually find this really endearing that Bowen always takes the empty syringes and "gives" Blake his medicine.

 The set-up in the twins' room:

From left is the dialysis machine on the dresser.  On the iv pole is his feeding machine and that blue machine clear to the right is his dinamap (blood pressure) machine.

Dialysis is a pretty easy thing.  That clear liquid fills up Blake.  It sits there (dwells) for 35 minutes and pulls off excess fluids and toxins.  Then, it drains it off.  Then is fills him up.  Sits there for 35 minutes, then drains.  Blake is hooked up for 10 hours every night, for a total of 12 cycles. 

Every morning and every night we have to take Blake's blood pressure, temperature and weigh him.  This is the first half of our log sheet from October.  At the end of every month, we send them to Iowa City. 

Blake just takes everything in stride.. :)

 

Coming out his pj bottoms on the left is his dialysis tubing and the right is his feeding machine tubing.  Because Blake doesn't take really anything by mouth, his nutrition (formula) has to come through his g-tube.  We hook him up during his naps and overnight.

 

And........lights out. 

 

I'm not sure what this sounds like to a "normal" person.  By normal, I just mean someone who isn't exposed to dealing with a child with kidney disease on a regular basis.  Like I said, we're used to it.  The kids are used to it.  It's just what we do.  :)

We feel blessed that Blake has done as well as he has on dialysis and we pray that this continues until he can get his kidney transplant.