Gettysburg Address

EDITED - Apparently the video didn't work last night!  I've redone it, hopefully it works now!

Roman wanted to show this to his Mommy Katie, but it was too big to e-mail, so I posted it here.  He learned it at school (and was so excited because she sent him a post card from Gettysburg today!

Urology Appointment

Another great appointment today!  This was the one I was the most nervous about because the Urologist was really skeptical letting us wait 4 months. He wanted to do the permanent catheter back in November, but we have been trying SO HARD and it's paid off!  

We started our marathon day with ultrasounds. He had to drink at least 20 oz an hour before so that his bladder was full. They had to do pre and post void ultrasounds but had warned us that they may have to do a VCUG as well if they weren't able to see enough with the ultrasounds.  The VCUG is the worst test for him, and we really didn't want to do it.  I talked to Roman about it a lot.  I had huge knots in my stomach but was positive with him.  

Oh, and backing up, as we were walking out to the car, he fell on the ice on our driveway and skinned his CHEEK, I have never seen a skinned cheek, but it looks so sad!  :(  So before we were even gone he was really emotional about that, and the anticipation.  

Thankfully he had a great radiology tech who was so great with Roman.  The tech talked and played with Roman while he did the ultrasound.  He got all the images for the pre-void ultrasound then sent us to the bathroom.  Roman went to the bathroom and we went back and the first thing he checked was how much he still had in his bladder.  He still had 56 ml in his bladder (which isn't that bad for Roman, but more then they like for a post void ultrasound so we were looking at the seriously possibility of a VCUG)  He said "I'll just delete that one and have him try one more time."  So we went back to the bathroom and he was able to get it down to 12 ml which they were fine with so NO VCUG!  YAY!  Bladder and Kidneys looked about the same.  Left kidney (more damaged one) looked a little worse, Right kidney looked a little better, ureters still dilated, bladder still hard and rigid.  

After that we went to see his Urologist and he started by asking how things have been going over the last 4 months, went over results from the tests and nephrologist, looked at the ultrasound and asked about Roman's bathroom habits.  He commented again how surprised he was how great the school has been about making sure he gets to the bathroom frequently, he was been very thankful for the school he is at.  Especially his teachers.  I give them a lot of credit too for helping us get him better! After all that he told us that we are doing a fantastic job managing his damage and that for now he doesn't see a need for the foreseeable future to place a permanent catheter.  He was very impressed that we are doing the cluster voiding (he has to pee every 10 minutes for the last hour before bed) at night still, getting up in the night and that Roman's kidney function is still improving.  So everything is basically still the same, but I feel so much better about it. We are used to this.  We do it already so it's good to know we are doing the best thing for him.

the evolution of giraffes

Roman - mom, do you think giraffes evolved from brontosaurus's?
Me - um, maybe.
Roman - I think they are. they both have long necks, short legs and eat plants.

Roman Kidney Update

Yesterday Roman went back to his Kidney doctor.  His last appointment was in November and he had not had any improvement in his Kidney function since September, so I didn't really know what to expect.  We were hoping things would continue to improve, but we never know what to expect.  That's the hardest part of an unseen illness, you can't SEE it!  You don't know what is going on in there!

Now onto the appointment.  They weighed and measured him and he is now in the (39 lbs) 10% for weight and (40.75") 4% for height, his blood pressure was a little high, but normal for him since he was hospitalized (105/77).  In July he was not even on the charts for weight or height, so he is growing!  He's grown 2.5" since July so on track to grow the 3-4" they predicted he would grow this year.  He weighed 33 lbs at the hospital, so he's gained 6 lbs, which is huge.

His creatinine level had been consistently 1.02 the previous 3 blood draws (well 1.024, 1.021, 1.027), we were hoping it would be below 1.0, but with 3 relatively stable draws we weren't very hopeful.  Anyway, his creatinine level is now .90.  We are now hoping for under .85 which will put him over 50% function.  His doctor is a very positive realist if that makes sense.  He is always happy about good news, but realistic that it may or may not improve and makes me feel okay about things.

His iron level was another thing we were concerned about, if it was low again he would need another hemoglobin shot.  He has been taking iron twice a day for the last 4 months and his iron level was on the high end of normal.  Meaning, not only did he not need the shot...he is able to only take it once a day now!

His sodium, phosphorus, and potassium levels were all LOW, not even on the low end of normal, low for a "normal" patient.  So they said Roman could have 1 meal with potassium (meaning he can now have tomato sauces on noodles, potatoes, oranges) and 2-3 servings of dairy a day (and they said ice cream would be okay, he is over the moon excited about having ice cream again!)

He did add one Rx for Vitamin D and he may have to have something to help with his parathyroid at the next appointment, which is also common with kidney failure.  He said the biggest problem with the elevated parathyroid hormone is that it can lead to Ricketts (which is apparently also common with kidney kids) so we are just monitoring that also.  So one Rx down, one up, overall great news.

Monday he goes to his Urologist, hopefully we get good news there too.  

A Tub Full of Pillows and Blankets

Tonight as Roman was finishing his shower Hudson started bringing his pillows, blankets and monkeys into the bathroom.  I asked him what he was doing, and at first it looked like he was setting up a bed to sleep in on the floor.  I turned around to answer a question from Roman and the next thing I know he is throwing them all into the tub.  As soon as they were all in the tub he climbed up onto the edge and started jumping in. They did this until bedtime then begged to do it again tomorrow before bed.

 I told them this was their last jump so they wanted to do it holding hands!  SO CUTE!  I love these crazy boys!!

dog trouble

Hudson - mom, brodie's gonna be in BIG trouble!

Me- why is brodie in big trouble?

Hudson- 'cause she's eatin' my macaroni!

Me- did you drop it?

Hudson- no, i gived it to her like this (as he holds out his spoon letting the dog eat it off the spoon)

Me- i think it's you who's going to be in big trouble!

Dinner Conversations

Last night we had dinner at my parents house.  We had lasagna, salad, bread sticks, and cream cheese wantons.

At the dinner table:

Roman - Mom can I have another of the semi-circles.  They are really delicious.
Me - The semi-circles?  Seriously?  Would you like another wanton?
Roman - Don't laugh, they are semi-circles.

A few minutes later...Hudson did not like the lasagna.

Hudson - I can't eat this.  It is not good for my kidneys.

(I think he's been around his brother a little too much!)

Sad Story

ounc (once) ter (there) was a baby namde (named) Roman and wen (when) he grew up he got dead.

the end

My morning with Hudson

This is what I should be doing....



This is what I am doing instead...

Learn to drive

Driving to Romans school the car in front of me is going 15 mph in a 40 zone talking on his phone.

Me- Dude, can you learn to drive?
Hudson - Um, nope. I can't. I'm only 2.

American hair

Roman - Mom, why don't you ever color my hair?
Me - I love the color of your hair.  I wish my hair were the color of your hair!
Roman - Then you wouldn't have American hair.
Me - Why, is your hair from Mexico?
Roman - Well...are babies born with hair?
Me - Some babies are born with hair.  When you were born you had beautiful red hair.
Roman - So when I was born, did Mommy Katie say "What?  He has Mexican hair!"
Me - Um, no.  She said, "Look he has beautiful red hair."
Roman - Same thing.

He's addicted!

On the way home from taking Roman to school this morning...

 Hudson - Mom, mom, turn around! You need to go to the cinnmelt window and say "We need cinnments!"

Hudson's dream

This morning when I went in to get Hudson up the first thing he told me:

I went on a helicopter, and brudder went on a helicopter with me.